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Building Relationships in Inclusive Research in DiverseContextsJournal ItemHow to cite

Chalachanovaacute Anna Nind Melanie Power Andy Tilley Elizabeth Walmsley Jan Westergaringrd Britt-EvyOstby May Heia Torill Magne Gerhardsen Alf Magnus Oterhals Ole and King Matthew (2020) BuildingRelationships in Inclusive Research in Diverse Contexts Scandinavian Journal of Disability Research 22(1) pp147ndash157

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httpscreativecommonsorglicensesby40

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Link(s) to article on publisherrsquos websitehttpdxdoiorgdoi1016993sjdr681httpswwwsjdrsearticles1016993sjdr681

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Chalachanovaacute Anna et al (2020) Building Relationships in Inclusive Research in Diverse Contexts Scandinavian Journal of Disability Research 22(1) pp 147ndash157 DOI httpsdoiorg1016993sjdr681

ORIGINAL ARTICLE

Building Relationships in Inclusive Research in Diverse ContextsAnna Chalachanovaacute1 Melanie Nind2 May Oslashstby37 Andrew Power2 Liz Tilley4 Jan Walmsley4 Britt-Evy Westergaringrd5 with Torill Heia6 Alf Magne Gerhardsen1 Ole Magnus Oterhals7 and Matthew King2

1 VID Specialized University NO2 University of Southampton GB3 Oslashstfold University College NO4 The Open University GB5 Oslo Metropolitan University NO6 Kongsberg NO7 Molde University College NOCorresponding author Melanie Nind (MANindsotonacuk)

This article explores relationships between academics and people with intellectual disabilities collaborating in inclusive research The authors present and reflect upon narrative accounts from Norway and England from both sides of the relationship Each relationship is examined including how it was initiated established developed and sustained what worked well what the obstacles were and how any conflicts were approached The concept of being an lsquoalongsiderrsquo working alongside each other (and alongside participants with intellectual disabilities) is used The paper shows variety in how alongsider relationships are initiated and fostered over time Mostly partnerships were initiated informally based on pre-existing relationships as friends or through support worker-client relationship or earlier research cooperation although one was initiated through a formal selection process The paper concludes that when building relationships over time the personal dimension is important including sharing an interest mutual respect and liking each other while funding and tight timelines can interfereAccessible Summary

bull Academics and researchers with intellectual disabilities from England and Norway wrote this article together

bull Academics thought up the idea and wrote the background and discussion people with intellectual disabilities wrote about their experiences

bull The paper tells how we got to know each other and how we kept in touch over timebull We wanted to do this because academic researchers in Norway want to do more research with people with intellectual disabilities and need to know how to get started and keep it going

bull We learnt that it takes time spent alongside each other to build good research relationships and it depends on having fun together as well as working

bull We learnt that the academic researcher needs to provide some support even when there is someone else with that job

bull We learnt that sometimes funding and deadlines can get in the way of building strong research relationships

Keywords intellectual disabilities inclusive research alongsider research research relationships

PurposeIn this paper we explore relationships between academics and people with intellectual disabilities who do research together The idea came out of a discussion between Norwegian and UK researchers about experiences of doing inclusive research We approach this exploration by reflecting on the narrative accounts of some of the authors with and without intellectual disabilities across the two countries drawing out themes and making connections with other work on this topic The academics authored the parts of the paper beyond the core narratives though our aims and the core themes were shared and discussed amongst us all

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts148

In England self-advocacy and inclusive research are relatively well established compared with other countries Although under threat from cuts self-advocacy organisations have helped build peoplersquos capacity to communicate their own interests desires needs and rights Organised self-advocacy groups have helped academics to find people with intellectual disabilities interested in research and they can lead to research initiated by disabled people (eg Armstrong et al 2019) In England (and Australia) there have been repeated accounts of researching with the same self-advocates with whom strong relationships build over time (eg Herron Priest amp Read 2015 Strnadova et al 2019) In Norway by contrast organised self-advocacy is largely undeveloped the country lacks the kind of self-advocacy organisations with experience in doing research and supporting researchers that have emerged in England Other routes for disabled people and academics finding each other for collaborations are needed Moreover without the support afforded by self-advocacy organisations or similar the work of supporting a disabled person to be a researcher is potentially more firmly placed on the shoulders of academic researchers Given these different national and structural contexts we explore how the dissimilarities can make a difference to how academics and people with intellectual disabilities collectively relate with one another In this paper we draw on our own experiences and reflect on how research relationships are and can be established The contexts span funded and unfunded research in both countries on a range of topics Our purpose is to reflect upon ways to foster relationships which support inclusive research where academics work alongside researchers with intellectual disabilities and to ask what supports such relationships

We begin the paper with some background context about the rise of inclusive research and then discuss attention to relationships within the literature about it to set the scene In a traditional format the methods and ethics surrounding the generation of datamdashnarratives of relationships in inclusive researchmdashare then presented ahead of the narrative accounts (findings) and finally discussion of what they add to the field

BackgroundInclusive research emerged in England and Australia in the late twentieth century alongside deinstitutionalisation the emergence of self-advocacy and a discourse of human rightsmdashNothing About Us Without Us (Walmsley amp Johnson 2003) It is defined as research where people with intellectual disabilities work with and as researchers no longer objects of research but active in the process (Walmsley amp Johnson 2003 Nind 2014 Bigby et al 2014) Inclusive research requires an ethic of respect for the lives views and experiences of people with intellectual disabilities and for the knowledge they hold and can add to the research process There is now a wealth of material upon which researchers can draw for guidance if they want to work inclusively This includes in Norway Oslashstby and Haugenesrsquo (2019) handbook which includes Norwegian examples from early inclusive research work in the country

Some of the literature on inclusive research includes discussion of roles and responsibilities and ventures into the nature of the relationships between researchers (eg Walmsley 2004 Butler et al 2012 Frankena 2019) This is not surprising given that the inclusive turn is very much about a radical change in how research relationships are configured A goal has been to disrupt these relationships so they become more democratic actively including the people whom the research is about in decision-making and encouraging them to take on roles as researchers (Nind 2014) Some papers focus on relationships between individuals and organisations (eg Armstrong et al 2019) The majority of the literature though focuses on how power dynamics are managed within a particular project or partnership For example Bigby Frawley and Ramcharan (2014 56) describe in some detail how lsquotrusting relationships and dispersed powerrsquo is a core component of their collaborative group model for doing inclusive research They relay how members of one group got to know each other building trust and camaraderie through regular contact which included banter mutual respect doing what they promised and being collegial in their decision-making Such relationship building they argue takes skill care and time However Frankena et al (2019 720) observe that the structured study of roles and relationships in inclusive research has lsquoreceived little attentionrsquo and lsquofocussed mainly on short-term projectsrsquo

Literature on teamwork and team-building in inclusive research projects (eg Bjornsdottir amp Svensdottir 2008 Butler et al 2012 Strnadova et al 2014) indicates the value of people with different skills and backgrounds spending time together enabling people to find what they have in common Team building for inclusive researchers might mean being friendly or even being friends spending non-work time together being committed to each other in deep ways (eg The Learning Difficulties Research Team Townson et al 2004 Chapman and McNulty 2004) Partnerships though can begin by being open to people who need to lsquolearn on the job hellip reflecting and adjusting to experiences along the wayrsquo (Woelders et al 2015 532)

Occasionally there has been interest in bringing the difficult aspects of inclusive research into the open for debate (Walmsley amp Johnson 2003) McClimens (2008 273) echoes concerns that lsquosome of the grittier and messier aspects of collaboration [get] hellip glossed over or perhaps ignoredrsquo Woelders et al (2015) argue that expectations arising from an idealised vision of inclusive research can interfere with building good relationships and research practices Ellis (2018) discusses the minutiae of working together to make decisions and shows that relationships with support workers can be a complication when seeking collaboration After wide engagement with people

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 149

with intellectual disabilities and academics doing research inclusively Nind and Vinha (2014) identified factors that were important to relationship building talking things over sharing skills and knowledge in working things out sharing a purpose spending enjoyable time together and opening new opportunities for each other Differences in power and experience were handled through providing support lengthy negotiation or recognising interdependence

In this paper the focus is on how academics and people with intellectual disabilities have initiated and sustained research relationships Utilising a convenience samplemdashthose research relationships of which the Anglo Norwegian authors have direct experiencemdashwe include reflective accounts from both sides of the relationship those with intellectual disabilities and those with academic roles This is less about researcher positionality (as insiders or outsiders) as about our relationships as lsquoalongsidersrsquo a concept developed by Carroll (2009) in the context of video-ethnography and video-reflexivity in hospital research The concept reflects her feminist research concern with being an agent of change of wanting to support active participation of research participants being honest and reflexive This is captured in the idea of lsquofeeling alongsidersquo and lsquolooking alongsidersquo (rather than at) participants In inclusive research researchers with different skills and life experiences explore alongside each other and alongside participants they align themselves to each other and a shared purpose This paper discusses what kind of relationship-building supports this stance

The Narrative MethodWe include narrative accounts of five inclusive research relationships here the first three from Norway and fourth and fifth from England There is a long tradition of using narrative approaches in intellectual disability research Narratives have been collated and examined to present alternative histories (Atkinson et al 1997 Walmsley amp Jarrett 2019) to explore identity (Atkinson et al 2000) and to destabilise intellectual disability grand narratives of deficit and deviance (Goodley 2001) Narratives give voice to lived knowledge and offer the potential for new hybrid discourses to emerge (Roets et al 2007) As Andrews (2007 10) has pointed out narrative research is also lsquobroad and flexiblersquo enough to accommodate multi-disciplinary endeavours such as this paper which brings together experiences across the social sciences and humanities

All but one of our narratives comprises reflections from both the academic researcher and the disabled researcher We have used pseudonyms because regulations to protect vulnerable people in Norway necessitate anonymity including concealing place and project names This illustrates the tensions between protection and empowerment which haunt inclusive research While there were no such requirements in England as part of the ethics protocol required and approved by the Norwegian Centre for Research Data the authors with intellectual disabilities consented lsquoto help to write an article together about working with the researcherrsquo lsquoto answer questions about my work with the researcherrsquo lsquothat the researcher can write about her work with me in the articlersquo lsquothat my name is on the list of authorsrsquo and how personal data would be used The academics wrote their own narrative accounts while the narrative accounts of the people with intellectual disabilities were generated through a supportive process This involved a researcher other than the person they do research with asking specific questions to generate an account that the person could reflect on and check In advance the academic authors agreed on the questions to address including about how the relationship was initiated established developed and sustained the potential obstacles or conflicts and how they were resolved We created an accessible interview guide to support the process The authors reflected on a relationship that stood out as the first such research relationship or one that lasted a long time or developed from friendship because it was challenging or creative or sometimes a combination of these factors

Analysis of the narratives was conducted by the academic researchers and followed a set of questions linked to the interview guide We were looking at what the stories emphasised what qualities in the person or relationship were valued how the relationships were sustained and how conflicts were resolved The analytical process and its readings were inspired by the work of Fjetland (2015 2019) with an emphasis on description of results and interpretation The iterative analytic process is summarised in Table 1

Table 1 Analytic process

First round open naive intuitive reading

Second round thematic reading

Third round discursive reading Fourth round interpretative reading

What characterizes the research relationship

How are the relationships initiated

What conflicts are described and how are they resolved

What are the qualities of the alongsider research relationships

(General characteristics of research ndashrelationship)

How are the relationships developed and sustained

Any other challenges What challenges are depicted in the narrative accounts

(General characteristics of research relationship)

(Responsibility fear of harm power imbalance equality end of relationship)

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts150

Narrative Accounts of Relationship Building in Inclusive Research1 Norway Shared perspectives from Brittany and AnnaThis part is written together by the academic Brittany and the co-researcher Anna based on extracts from a book they wrote together

We have known each other since we grew up in the same neighbourhood Brittany knew that Anna had many friends was good at telling stories and was a good team player The conversations we had about friendship became a good start for us to write a book It was important for us to decide together how the book would be Neither could write the book alone Annarsquos job was to decide what stories the book should contain Brittanyrsquos job was to encourage Anna to gather her experiences and feelings into words

Initially we sound-recorded our conversations The idea was that Brittany should write what Anna said and read it back Brittany wrote about what Anna said but we realised that we wanted the book to be Annarsquos words and not what Brittany wrote about her We came on track when Brittany started writing while Anna spoke about her experiences Anna corrected and edited the text Anna had a printed manuscript but she wanted us to read the text together as that made it easier to understand and to change Every time we met to write we re-read what we wrote last time This gave Anna ideas for new stories

Often it was easier to work with the book and make important contributions when we were together for several days The cooperation gave us the opportunity to experience something good together When we did things we liked it was easier to work on the book

The staff in Annarsquos home were helpful when we planned writing trips Anna advised them when we were going to travel and where and the staff helped her with packing and getting on the train However if Anna came home after ten orsquoclock in the evening her father had to collect her from the station as there was only one person at work

During the writing process there were new experiences that Anna felt insecure about However when she chose pictures for the book she was quite sure which pictures she wanted People who know her say that she became more confident after the writing started

Sometimes it was difficult for Anna to find words When she was completely stuck Brittany made suggestions but Anna always found her own way of saying it When we read large sections of the book together we often found more changes we had to make Anna would say lsquoIt was not quite the way it wasrsquo and Brittany would ask lsquoWhat do you want me to write insteadrsquo

Brittany had once been Annarsquos service provider but it was important that Brittany was not Annarsquos staff when we wrote the book it made it easier to be honest Because we know each other well it was hard to find the boundary for what was right to share with everyone We asked for other peoplersquos opinions in such situations At the beginning Anna decided where the different stories should be in the book but in the end Brittany did the last rounds of editing and text placement She never changed the content without Annarsquos agreement Anna read and approved each word in the book

Anna was the driver behind getting the book done We are a good team Our respect and love for each other increased in line with each new page we wrote together We still work together with research and presentations and we are still very good friends We talk almost every week Anna is an important discussion partner in many things Brittany is doing as a teacher and researcher

1 Norway Co-researcher AnnaA trusted staff member conducted this interview with Anna The interview was transcribed verbatim and translated to English

What made you say lsquoyesrsquo to work together with Brittany this time She asked me I wanted to continue the collaboration and try something new

Is there anything you want to say about Brittany that you think is important for others to know about I think we enjoy working together We travel together We have good time together We are active together We call each other She is nice to talk with It is easy to keep in touch with her It is always exciting when we are together I experience many new things together with Brittany I enjoy being together with her We work in a cafeacute I like that

What do you think the collaboration has been like Very good We know each other very well We have close contactIs anything boring or difficult about the collaboration No We both come up with suggestions I have good ideas and

she has good ideas We cooperate I am interested in the same things as her We exchange and take up matters Irsquom happy with that We never disagree We solve things together Irsquom not afraid to say either We have the same values She is important to me

2 Norway Academic researcher YvonneI met Oliver a few years ago while working at a supported living facility for people with intellectual disabilities We discovered we had a lot in common and enjoyed spending time together I got to know Oliverrsquos wishes for the future and I started to think about doing research together with people with intellectual disabilities to explore everyday life topics together

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 151

Conversations with Oliver and his curiosity to explore some topics inspired a research project application This emphasised inclusive research and exploration of the issues of relevance for the everyday lives of people with intellectual disabilities initiated by them

In the project I worked with two groups and Oliver was a member of one of them I did not approach him directly but through staff because I did not want to influence his decision This was due to ethical considerations but could be perceived as paternalistic In both groups we worked within the framework of participatory action research with emphasis on cooperation and co-production We talked about our lives mundane activities throughout the day leisure activities etc before we discussed the topics we in the group wanted to explore together Oliver was an active contributor and mentioned some of the same issues we were talking about when we first met a few years ago

I hoped that researching together might bring different perspectives on the topics and give some answers to the co-researcher as well Even though I knew Oliver well I could not be sure if this way of working together would fit us or if it would put our relationship at risk Nevertheless it was important to try Knowing each other before the start of the project could be both a plus and a minus It was important to reflect on this before and during the project I discussed the pros and cons ethics moral actions and vulnerability in colleague supervision

My relationship with Oliver changed and probably grew stronger during the project We are now both colleagues and friends We went from email communication including one or two staff to direct email communication between just the two of us I was anxious initially but I am now sure that it was right to include Oliver as he is now participating in new projects and still enjoys research very much I did not want to put our relationship at risk and did not want to cause Oliver any trouble or harm There were many layers of both risks and gains responsibility power imbalance having faith in the co-researcher and willingness to change our relationship His lsquoIrsquom already looking forward to the next meetingrsquo was reassuring

The research group developed and grew into a version of a self-advocacy group In addition to researching we discussed other issues brought up by members such as how to tell support staff what they do not like or how to approach a specific problem Researchersrsquo relationships have many functions not only as researchers and colleagues but also as supporting staff and friends When it comes to my relationship with Oliver the original project has ended He is now taking part in two new projects and thriving in the role of researcher

2 Norway Co-researcher OliverYvonnersquos colleague conducted the interview on which this is based The interview was recorded and transcribed verbatim This is taken from the transcript

I got to know Yvonne when she started to work where I live She worked there for a while She is nice and kind I do not remember when it was but it has been a while Yvonne is very kind nice listens to people likes to help people and respects people very helpful and good you can trust her and feel safe During the time Yvonne worked at my supported living facilities we spent time together during the day and sometimes in the afternoon after 3 pm We did different things together mostly everyday life stuff

When it came to the project Yvonne asked my contact people then they asked me if I wanted to participate and I said yes I have not regretted No it went very well It was not easy all the time but it went very well We talked about how it is to live in places how we are on a daily basis how we feel and different stuff I think it was very good it was positive and pleasant to meet other people I was very nervous the first time and afraid Nothing was difficult Everything went well It was nice We asked questions and wrote down how things were Everybody got to say what they meant how they felt what they thought There was nothing I thought of as difficult Everything went well When it comes to how we decided the topics Yvonne came up with some ideas at first then we had ideas about what we wanted to say It was both Yvonne and us I do not remember everything I said but I said quite a few things during the research project I do not think we could have spoken about other topics I do not know what it could be We always agreed I like to be with Yvonne it feels like you can be yourself and it feels as if you can trust Yvonne and feel safe so you think you can be open and be yourself I really enjoy being with the researcher I trust Yvonne so it is very nice

3 Norway Academic researcher JuneI met Mike when I was interviewing persons with intellectual disabilities about self-determination His level of reflection interested me he discussed different views of the situations in filmed vignettes and related these to his own life both the similarities and differences

In a new project I had to recruit a co-researcher and Mike was the first to come to mind Mike was very interested He said yes and we became a team We travelled together to meetings staying at hotels Sometimes we also met other participants in the evenings but on several occasions it was only Mike and me This brought us quite close getting to know each other well During dinners we discussed politics football news and how we liked to live our lives We talked a lot Since we did not bring an assistant I helped Mike in matters like medical assistance and booking tickets

At the time when we got funding for a second project I moved to another part of the country Nevertheless I continued as the project manager and met Mike quite often We also talked by phone It was sad to split the team but we were both pleased to meet in project meetings The last year of the second project we were invited into a third project about assistive technology

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts152

Mike and I have worked together since 2011 in three different projects also lecturing together and collaborating in translating official documents into an easy read He is remunerated for his work

Although I assisted Mike when travelling we agreed that I would not be like his assistant but a colleague We talked about colleagues helping each other This has worked both ways Once I ordered a wrong ticket for the plane luckily Mike discovered that and told me Sometimes we quarrel and bicker but we also talk a lot and laugh a lot we are partners

When we worked on two parallel and quite similar projects I think it sometimes was too much for Mike But now that the third project is ending he thinks it is too little He says that as long as he can work with me he will

This is a long-lasting relationship that has given both of us insight into each otherrsquos lives and we have found good ways for collaborating We learn from each other and we know each otherrsquos difficulties and priorities It is also about a personrsquos experiences of being empowered by participation in research and being a teacher As Mike answered when he was asked about his participation lsquoIt feels good to be a part of societyrsquo

3 Norway Co-researcher MikeJunersquos colleague interviewed Mike writing down his answers June went through the transcript with Mike He also read Junersquos narrative and asked her to change one part

We got to know each other in 2011 I was interviewed about a film and if I thought that the person in the film was self-determined or not Later I was asked to participate in a research project I thought why not And I said yes because it is nice to get out of day-care centres and try another kind of work I think it was June that asked me because she thought of me

The first two projects co-researchers participated because they knew how it was to receive help at home The last project I had to think a lot about It was about not being able to talk and having assistive technology Because they were without spoken language it was not quite me Then I thought about a friend of mine who I have known for some years He has lost some of his language and sometimes uses a wheelchair That experience made me say yes

I think June is a cracking good research manager and mentor She is very smiley nice and easy to get to knowWe collaborated about analyses in the projects And we have planned travels hotels and budgets I need some help

with my budget and travels for our meetings and conferences I think our collaboration is nice We take everything with a smile and make things work

I cannot really come up with anything that is boring or difficult It can be cumbersome after June moved to another part of the country Because then I do not travel together with her and we have to find other ways Sometimes it is hard to participate difficult or boring if I do not manage It might be analysing Or talking about the same things over again

She is the researcher and decides what we should do and then I have to answer if I agree and then we start It might be that she starts and then I get going and then I also decide You know that is her motto Self-determination

[Are you interested in continuing cooperation with June] Yes yes yes absolutelyEveryone has the right to have different opinions Neither of us wants to start a conflict if we disagree Maybe she

finds another way to explain to make me reconsider She helps me to formulate my thoughts in another way to think more carefully about things First I disagree than she says something and I think lsquothat is okrsquo If she disagrees with me she says things that make it easier for me to reformulate But thatrsquos not the same way with others With another one I can be stuck more than necessary June is cracking good in helping me to think more about things I need a couple of conversations to think more about things How to say things if something is wrong how to do that

[Why it is important for you to cooperate with her] To manage to function in all projects and whatever we do to make me function How we work together It is extra extra important to work together with her after she moved To maintain our contact so it does not fade I do not want to lose our contact

4 England Academic researcher DannyIn 2012ndash2013 I undertook a study with another researcher to explore what welcoming communities look like for adults with intellectual disabilities We began working with a local advocacy organisation and a core group of four adults with intellectual disabilities to record their experiences over a year We conducted repeat focus groups which enabled us to build relationships with each participant We also gave everyone disposable cameras to photograph the places where they liked spending time One of the participants Mason shared his experiences of going to football games saying he felt he lsquofitted inrsquo as a fan At the final meetings we co-produced the analysis and an exhibition of the photographs and findings Mason was actively involved suggesting ways to generate publicity and ideas for the venue

We undertook a second project in 2015 where we sought to employ two adults with intellectual disabilities as co-researchers I invited Mason to become one of them The research was about the experiences of middle to older age adults with intellectual disabilities Mason helped shape the interview questions and interviewed other local adults

On completion of the project I was keen to stay in touch with Mason as he had shown a strong passion for making a positive difference and had similar interests to me in gadgets and football I successfully applied for a small impact grant to co-establish a disability platform to maintain linkages with Mason and other local disabled people and their representative organisations This enabled us to fund workshops and seminars with people we had met in previous projects including Mason

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 153

The members helped to co-produce the activities of the platform Mason co-presented findings from our previous project at the launch The grant also enabled us to build international connections with the colleagues in Norway with whom we are writing this paper

Payment for members became an issue as the University refused to pay for vouchers over the long-term and monetary payment provided obstacles to some membersrsquo disability benefits I bought Mason an iPad as payment in lieu Funding cuts began to put constraints on the advocate-facilitators who often missed meetings due to other urgent commitments reminding us that inclusive research relationships are a precarious resource to manage Despite this in 2017 the platform helped inform a successful national research council grant proposal Mason continues to advise on the design of this project and the platform supports the local relationships involved

4 England Co-researcher MasonA colleague of Danny and Mason interviewed Mason audio-recording his answers and translating them into a narrative account She sent this to him to check and double checked again when they met whether he wanted any changes

I first got to know Danny through the advocacy organisation when he came to a meeting to talk about the research A lot of us volunteered It was about places and towns and what you did We ended up presenting the research at the town hall together I think wersquove worked together since 2012

I thought I could work with Danny because of his enthusiasm for research Hersquos got an approachable nature Thinking back to the beginning he made it interesting We had pocket cameras to take pictures of things that meant something to us When he came back with another project idea I thought yeah go for it Wersquove got to know each othermdashhe builds bonds with people He allows you to speak and put your ideasmdashyour frustration at whatrsquos going wrong

Itrsquos good now to work with people from the University thatrsquos really interesting and meeting people from People First itrsquos not all rosy for them but they have big social events For me now moneyrsquos really tight so I donrsquot get out so much The research work has been paid through vouchers which has helped me get some electricals and Dannyrsquos putting money towards a device Danny is good in that way Trips over to the University mean I get to see whatrsquos going on The topics that Danny has come up with have been very interesting and important If someone new asked me to do research I would be interested If you think about it before 2012 Irsquod never met Danny

5 England Academic researcher LucyLucy narrated her experience but co-researcher Emily opted not to contribute her account

Our three-year project was focused on researching the co-production of an inclusive archive of intellectual disability history We secured funding to build a research team that included academics two post-doctoral researchers and an intellectually disabled researcher

This was the first time a UK University had research council funding to employ an intellectually disabled researcher on the same terms and conditions as a post-doctoral researcher The aim was both political and ethical We wanted to demonstrate the value of lived experience and set a precedent for intellectually disabled people to be remunerated fairly for their contributions in academic research It was to signal equality in employment rights but also equality in research relationships The project also had funds to pay a personal assistant for the disabled researcher

Things got off to a shaky start The University required persuading that the project should advertise specifically for a researcher with intellectual disabilities and that its standard recruitment materials and processes needed adaptation to make them accessible this delayed the project start date by months

Eventually we pulled together the core team and hired Emily our intellectually disabled researcher Although Emily did not have much research or self-advocacy experience she was passionate about history and making information accessible While we were in the process of recruiting Emilyrsquos personal assistant support was provided by Anne one of the post-doctoral researchers They worked very closely undertaking an inclusive literature review designing workshops and promoting the project at conferences Much of this was new to Emily who required a lot of support including emotional support She was quite anxious in these first few months They developed a close rapport prompting innovative work as the project progressed

My own relationship with Emily developed more slowly Much of my time on the project involved administrative financial or management issues Delays to the project start date and early team meetings that Emily did not find accessible created tensions which I felt a responsibility to resolve The three researchers (along with Emilyrsquos assistant once she was in place) developed strong working relationships and became lsquoa team within a teamrsquo They spent time together and communicated regularly by Skype My perception was that challenges in managing the work between them were dealt with sensitively kindly and with good humour Emily and Anne both had a strong interest in involving people with profound and multiple intellectual disabilities in the archive and led this strand of work

When Emilyrsquos personal assistant left a few weeks before the end of the project Anne and I agreed with Emily to cover the support role between us By that stage Emily was confident in the job We worked together productively analysing data co-writing an article and organisingarchiving the project material We ate lunch together and talked about our lives our families and our holiday plans Emily still referred to me as lsquothe bossrsquo (a nickname she coined in the first few weeks) but our relationship changed I experienced that with calmness and time co-researching can be a

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts154

hugely stimulating creative and enjoyable process I reflected that much of my time on the project had been focused on schedules and outputs and this had influenced my interactions with Emily Irsquom pleased that we had the opportunity to redress this towards the end I only wished wersquod had the chance to do it earlier

DiscussionThe five research partnerships that form our narrative data sit on a spectrummdashfrom a friendship which blossomed into a writing partnership (1) through to a full blown salaried research post and boss-employee relationship (5) In between was one collaboration which started as a service provider-client relationship and migrated into a friendly research relationship (2) and two where academic researchers talent spotted people who had previously been involved in self-advocacy or research (3 and 4) Four of the five relationships are medium to long term spanning several different projects Only the fifth where the researcher was salaried was confined to one three-year project ending thereafter

Our purpose in gathering and analysing the narratives was to reflect upon ways to foster relationships which support inclusive alongsider research where academics work alongside researchers with intellectual disabilities in conducting research and to ask what supports such relationships It was prompted by the absence of self-advocacy or user-led organisations in Norway to partner academics seeking to do inclusive research The narratives indicate a range of ways to initiate alongsider research relationships Other than in 5 no formal interview scrutiny of skills or qualifications is mentioned Pre-existing relationships were sufficient for the academic to ask an intellectually disabled person to work alongside them These pre-existing relationships came from friend-friend staff-client or researcher-researched beginnings and therefore they had to evolve and transform to become alongside in nature Only in 4 did the co-researcher come from an established advocacy organisation and even there it was based on a personal relationship While self-advocacy groups could not be the route to growing intellectually disabled researchers in Norway in one of the Norwegian examples (2) the opposite was true and research involvement grew a kind of self-advocacy group

In four of the five examples relationships grew organically The relative informality of the projects made this possible and there are lessons for others in this The difference from 5 is striking Emily was appointed through a formal selection process to a salaried post Timescales meant that the relationship could not evolve organically in the same way and the sense of feeling alongside each other was quite different

The five accounts show that building alongsider research relationships is a slow burn something also commented upon by many practitioners of inclusive research including most recently Frankena et al (2019) The personal dimension is central to this slow development The academic researcher is described variously as lsquokindrsquo lsquogentlersquo lsquonicersquo frequently but not always providing friendship as well as a professional relationship Reciprocity is stressed as are common interests They enjoy one anotherrsquos company share time out together Shared interests and fun positive experiences help to consolidate the relationships There is also an element of caring through small acts which helps sustain affection and trust These elements help sustain the relationships in the absence of funding In 5 this is less clear because we do not hear from Emily who declined to contribute having moved on since her employment as a researcher had ended

The external context plays an important part Often relationships started off informally but in the English examples particularly finances for continued research played a part in sustaining the relationship However it is Dannyrsquos personal qualities and commitment not money that encouraged Mason to think he would like to do more research The relationship in 5 survived as long as Emily was employed as a researcher Beyond the end of the project Emily was happy to be friendly have a coffee or a chat but not to put in unpaid work writing for this paper One might describe this as a more instrumental relationship

Working alongside each other the need for support always needs to be tailored to the situation In the Norwegian examples practical support is provided by the academic researchers perhaps influenced by their previous support roles prior to the research In the English examples practical support is ostensibly paid for separately from the academic research role Nevertheless in both academic researchers played a critical role in creating and sustaining the relationships Whatever form inclusive research takes with or without the support of an advocacy organisation or other staff support is inherent to the relationships it cannot be fully outsourced to personal assistants or others

Other than in 5 the research experience began with the researcher with intellectual disabilities reflecting on his or her own life In 2 3 and 4 they gradually migrated to considering other aspects of the lives of people with intellectual disabilities sometimes on matters of which they had no direct experience 5 was again different Emily was appointed because she showed a passionate interest in history at her interview and she was highly motivated to explore issues of consent because she could see how they impacted on people she knew well

In returning to Carrollrsquos (2009) concept of the alongsider we observe that in the literature on the process of doing research inclusively authors have mostly focussed on the dynamics of working alongside each other as researchers and for more activist research standing alongside each other in solidarity This reflects the much-rehearsed questions about who the research is with by and for The narratives in this paper though more illustrate Carrollrsquos dimension of feeling alongside being enjoyed by the people on both sides of the relationship This came through the longevity of many of the relationships and appeared to grow as the relationship grew Moreover this supported the transition into new research projects We suggest that the alongsider concept merits further attention in work developing and examining the added value of inclusive research

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 149

with intellectual disabilities and academics doing research inclusively Nind and Vinha (2014) identified factors that were important to relationship building talking things over sharing skills and knowledge in working things out sharing a purpose spending enjoyable time together and opening new opportunities for each other Differences in power and experience were handled through providing support lengthy negotiation or recognising interdependence

In this paper the focus is on how academics and people with intellectual disabilities have initiated and sustained research relationships Utilising a convenience samplemdashthose research relationships of which the Anglo Norwegian authors have direct experiencemdashwe include reflective accounts from both sides of the relationship those with intellectual disabilities and those with academic roles This is less about researcher positionality (as insiders or outsiders) as about our relationships as lsquoalongsidersrsquo a concept developed by Carroll (2009) in the context of video-ethnography and video-reflexivity in hospital research The concept reflects her feminist research concern with being an agent of change of wanting to support active participation of research participants being honest and reflexive This is captured in the idea of lsquofeeling alongsidersquo and lsquolooking alongsidersquo (rather than at) participants In inclusive research researchers with different skills and life experiences explore alongside each other and alongside participants they align themselves to each other and a shared purpose This paper discusses what kind of relationship-building supports this stance

The Narrative MethodWe include narrative accounts of five inclusive research relationships here the first three from Norway and fourth and fifth from England There is a long tradition of using narrative approaches in intellectual disability research Narratives have been collated and examined to present alternative histories (Atkinson et al 1997 Walmsley amp Jarrett 2019) to explore identity (Atkinson et al 2000) and to destabilise intellectual disability grand narratives of deficit and deviance (Goodley 2001) Narratives give voice to lived knowledge and offer the potential for new hybrid discourses to emerge (Roets et al 2007) As Andrews (2007 10) has pointed out narrative research is also lsquobroad and flexiblersquo enough to accommodate multi-disciplinary endeavours such as this paper which brings together experiences across the social sciences and humanities

All but one of our narratives comprises reflections from both the academic researcher and the disabled researcher We have used pseudonyms because regulations to protect vulnerable people in Norway necessitate anonymity including concealing place and project names This illustrates the tensions between protection and empowerment which haunt inclusive research While there were no such requirements in England as part of the ethics protocol required and approved by the Norwegian Centre for Research Data the authors with intellectual disabilities consented lsquoto help to write an article together about working with the researcherrsquo lsquoto answer questions about my work with the researcherrsquo lsquothat the researcher can write about her work with me in the articlersquo lsquothat my name is on the list of authorsrsquo and how personal data would be used The academics wrote their own narrative accounts while the narrative accounts of the people with intellectual disabilities were generated through a supportive process This involved a researcher other than the person they do research with asking specific questions to generate an account that the person could reflect on and check In advance the academic authors agreed on the questions to address including about how the relationship was initiated established developed and sustained the potential obstacles or conflicts and how they were resolved We created an accessible interview guide to support the process The authors reflected on a relationship that stood out as the first such research relationship or one that lasted a long time or developed from friendship because it was challenging or creative or sometimes a combination of these factors

Analysis of the narratives was conducted by the academic researchers and followed a set of questions linked to the interview guide We were looking at what the stories emphasised what qualities in the person or relationship were valued how the relationships were sustained and how conflicts were resolved The analytical process and its readings were inspired by the work of Fjetland (2015 2019) with an emphasis on description of results and interpretation The iterative analytic process is summarised in Table 1

Table 1 Analytic process

First round open naive intuitive reading

Second round thematic reading

Third round discursive reading Fourth round interpretative reading

What characterizes the research relationship

How are the relationships initiated

What conflicts are described and how are they resolved

What are the qualities of the alongsider research relationships

(General characteristics of research ndashrelationship)

How are the relationships developed and sustained

Any other challenges What challenges are depicted in the narrative accounts

(General characteristics of research relationship)

(Responsibility fear of harm power imbalance equality end of relationship)

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts150

Narrative Accounts of Relationship Building in Inclusive Research1 Norway Shared perspectives from Brittany and AnnaThis part is written together by the academic Brittany and the co-researcher Anna based on extracts from a book they wrote together

We have known each other since we grew up in the same neighbourhood Brittany knew that Anna had many friends was good at telling stories and was a good team player The conversations we had about friendship became a good start for us to write a book It was important for us to decide together how the book would be Neither could write the book alone Annarsquos job was to decide what stories the book should contain Brittanyrsquos job was to encourage Anna to gather her experiences and feelings into words

Initially we sound-recorded our conversations The idea was that Brittany should write what Anna said and read it back Brittany wrote about what Anna said but we realised that we wanted the book to be Annarsquos words and not what Brittany wrote about her We came on track when Brittany started writing while Anna spoke about her experiences Anna corrected and edited the text Anna had a printed manuscript but she wanted us to read the text together as that made it easier to understand and to change Every time we met to write we re-read what we wrote last time This gave Anna ideas for new stories

Often it was easier to work with the book and make important contributions when we were together for several days The cooperation gave us the opportunity to experience something good together When we did things we liked it was easier to work on the book

The staff in Annarsquos home were helpful when we planned writing trips Anna advised them when we were going to travel and where and the staff helped her with packing and getting on the train However if Anna came home after ten orsquoclock in the evening her father had to collect her from the station as there was only one person at work

During the writing process there were new experiences that Anna felt insecure about However when she chose pictures for the book she was quite sure which pictures she wanted People who know her say that she became more confident after the writing started

Sometimes it was difficult for Anna to find words When she was completely stuck Brittany made suggestions but Anna always found her own way of saying it When we read large sections of the book together we often found more changes we had to make Anna would say lsquoIt was not quite the way it wasrsquo and Brittany would ask lsquoWhat do you want me to write insteadrsquo

Brittany had once been Annarsquos service provider but it was important that Brittany was not Annarsquos staff when we wrote the book it made it easier to be honest Because we know each other well it was hard to find the boundary for what was right to share with everyone We asked for other peoplersquos opinions in such situations At the beginning Anna decided where the different stories should be in the book but in the end Brittany did the last rounds of editing and text placement She never changed the content without Annarsquos agreement Anna read and approved each word in the book

Anna was the driver behind getting the book done We are a good team Our respect and love for each other increased in line with each new page we wrote together We still work together with research and presentations and we are still very good friends We talk almost every week Anna is an important discussion partner in many things Brittany is doing as a teacher and researcher

1 Norway Co-researcher AnnaA trusted staff member conducted this interview with Anna The interview was transcribed verbatim and translated to English

What made you say lsquoyesrsquo to work together with Brittany this time She asked me I wanted to continue the collaboration and try something new

Is there anything you want to say about Brittany that you think is important for others to know about I think we enjoy working together We travel together We have good time together We are active together We call each other She is nice to talk with It is easy to keep in touch with her It is always exciting when we are together I experience many new things together with Brittany I enjoy being together with her We work in a cafeacute I like that

What do you think the collaboration has been like Very good We know each other very well We have close contactIs anything boring or difficult about the collaboration No We both come up with suggestions I have good ideas and

she has good ideas We cooperate I am interested in the same things as her We exchange and take up matters Irsquom happy with that We never disagree We solve things together Irsquom not afraid to say either We have the same values She is important to me

2 Norway Academic researcher YvonneI met Oliver a few years ago while working at a supported living facility for people with intellectual disabilities We discovered we had a lot in common and enjoyed spending time together I got to know Oliverrsquos wishes for the future and I started to think about doing research together with people with intellectual disabilities to explore everyday life topics together

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 151

Conversations with Oliver and his curiosity to explore some topics inspired a research project application This emphasised inclusive research and exploration of the issues of relevance for the everyday lives of people with intellectual disabilities initiated by them

In the project I worked with two groups and Oliver was a member of one of them I did not approach him directly but through staff because I did not want to influence his decision This was due to ethical considerations but could be perceived as paternalistic In both groups we worked within the framework of participatory action research with emphasis on cooperation and co-production We talked about our lives mundane activities throughout the day leisure activities etc before we discussed the topics we in the group wanted to explore together Oliver was an active contributor and mentioned some of the same issues we were talking about when we first met a few years ago

I hoped that researching together might bring different perspectives on the topics and give some answers to the co-researcher as well Even though I knew Oliver well I could not be sure if this way of working together would fit us or if it would put our relationship at risk Nevertheless it was important to try Knowing each other before the start of the project could be both a plus and a minus It was important to reflect on this before and during the project I discussed the pros and cons ethics moral actions and vulnerability in colleague supervision

My relationship with Oliver changed and probably grew stronger during the project We are now both colleagues and friends We went from email communication including one or two staff to direct email communication between just the two of us I was anxious initially but I am now sure that it was right to include Oliver as he is now participating in new projects and still enjoys research very much I did not want to put our relationship at risk and did not want to cause Oliver any trouble or harm There were many layers of both risks and gains responsibility power imbalance having faith in the co-researcher and willingness to change our relationship His lsquoIrsquom already looking forward to the next meetingrsquo was reassuring

The research group developed and grew into a version of a self-advocacy group In addition to researching we discussed other issues brought up by members such as how to tell support staff what they do not like or how to approach a specific problem Researchersrsquo relationships have many functions not only as researchers and colleagues but also as supporting staff and friends When it comes to my relationship with Oliver the original project has ended He is now taking part in two new projects and thriving in the role of researcher

2 Norway Co-researcher OliverYvonnersquos colleague conducted the interview on which this is based The interview was recorded and transcribed verbatim This is taken from the transcript

I got to know Yvonne when she started to work where I live She worked there for a while She is nice and kind I do not remember when it was but it has been a while Yvonne is very kind nice listens to people likes to help people and respects people very helpful and good you can trust her and feel safe During the time Yvonne worked at my supported living facilities we spent time together during the day and sometimes in the afternoon after 3 pm We did different things together mostly everyday life stuff

When it came to the project Yvonne asked my contact people then they asked me if I wanted to participate and I said yes I have not regretted No it went very well It was not easy all the time but it went very well We talked about how it is to live in places how we are on a daily basis how we feel and different stuff I think it was very good it was positive and pleasant to meet other people I was very nervous the first time and afraid Nothing was difficult Everything went well It was nice We asked questions and wrote down how things were Everybody got to say what they meant how they felt what they thought There was nothing I thought of as difficult Everything went well When it comes to how we decided the topics Yvonne came up with some ideas at first then we had ideas about what we wanted to say It was both Yvonne and us I do not remember everything I said but I said quite a few things during the research project I do not think we could have spoken about other topics I do not know what it could be We always agreed I like to be with Yvonne it feels like you can be yourself and it feels as if you can trust Yvonne and feel safe so you think you can be open and be yourself I really enjoy being with the researcher I trust Yvonne so it is very nice

3 Norway Academic researcher JuneI met Mike when I was interviewing persons with intellectual disabilities about self-determination His level of reflection interested me he discussed different views of the situations in filmed vignettes and related these to his own life both the similarities and differences

In a new project I had to recruit a co-researcher and Mike was the first to come to mind Mike was very interested He said yes and we became a team We travelled together to meetings staying at hotels Sometimes we also met other participants in the evenings but on several occasions it was only Mike and me This brought us quite close getting to know each other well During dinners we discussed politics football news and how we liked to live our lives We talked a lot Since we did not bring an assistant I helped Mike in matters like medical assistance and booking tickets

At the time when we got funding for a second project I moved to another part of the country Nevertheless I continued as the project manager and met Mike quite often We also talked by phone It was sad to split the team but we were both pleased to meet in project meetings The last year of the second project we were invited into a third project about assistive technology

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts152

Mike and I have worked together since 2011 in three different projects also lecturing together and collaborating in translating official documents into an easy read He is remunerated for his work

Although I assisted Mike when travelling we agreed that I would not be like his assistant but a colleague We talked about colleagues helping each other This has worked both ways Once I ordered a wrong ticket for the plane luckily Mike discovered that and told me Sometimes we quarrel and bicker but we also talk a lot and laugh a lot we are partners

When we worked on two parallel and quite similar projects I think it sometimes was too much for Mike But now that the third project is ending he thinks it is too little He says that as long as he can work with me he will

This is a long-lasting relationship that has given both of us insight into each otherrsquos lives and we have found good ways for collaborating We learn from each other and we know each otherrsquos difficulties and priorities It is also about a personrsquos experiences of being empowered by participation in research and being a teacher As Mike answered when he was asked about his participation lsquoIt feels good to be a part of societyrsquo

3 Norway Co-researcher MikeJunersquos colleague interviewed Mike writing down his answers June went through the transcript with Mike He also read Junersquos narrative and asked her to change one part

We got to know each other in 2011 I was interviewed about a film and if I thought that the person in the film was self-determined or not Later I was asked to participate in a research project I thought why not And I said yes because it is nice to get out of day-care centres and try another kind of work I think it was June that asked me because she thought of me

The first two projects co-researchers participated because they knew how it was to receive help at home The last project I had to think a lot about It was about not being able to talk and having assistive technology Because they were without spoken language it was not quite me Then I thought about a friend of mine who I have known for some years He has lost some of his language and sometimes uses a wheelchair That experience made me say yes

I think June is a cracking good research manager and mentor She is very smiley nice and easy to get to knowWe collaborated about analyses in the projects And we have planned travels hotels and budgets I need some help

with my budget and travels for our meetings and conferences I think our collaboration is nice We take everything with a smile and make things work

I cannot really come up with anything that is boring or difficult It can be cumbersome after June moved to another part of the country Because then I do not travel together with her and we have to find other ways Sometimes it is hard to participate difficult or boring if I do not manage It might be analysing Or talking about the same things over again

She is the researcher and decides what we should do and then I have to answer if I agree and then we start It might be that she starts and then I get going and then I also decide You know that is her motto Self-determination

[Are you interested in continuing cooperation with June] Yes yes yes absolutelyEveryone has the right to have different opinions Neither of us wants to start a conflict if we disagree Maybe she

finds another way to explain to make me reconsider She helps me to formulate my thoughts in another way to think more carefully about things First I disagree than she says something and I think lsquothat is okrsquo If she disagrees with me she says things that make it easier for me to reformulate But thatrsquos not the same way with others With another one I can be stuck more than necessary June is cracking good in helping me to think more about things I need a couple of conversations to think more about things How to say things if something is wrong how to do that

[Why it is important for you to cooperate with her] To manage to function in all projects and whatever we do to make me function How we work together It is extra extra important to work together with her after she moved To maintain our contact so it does not fade I do not want to lose our contact

4 England Academic researcher DannyIn 2012ndash2013 I undertook a study with another researcher to explore what welcoming communities look like for adults with intellectual disabilities We began working with a local advocacy organisation and a core group of four adults with intellectual disabilities to record their experiences over a year We conducted repeat focus groups which enabled us to build relationships with each participant We also gave everyone disposable cameras to photograph the places where they liked spending time One of the participants Mason shared his experiences of going to football games saying he felt he lsquofitted inrsquo as a fan At the final meetings we co-produced the analysis and an exhibition of the photographs and findings Mason was actively involved suggesting ways to generate publicity and ideas for the venue

We undertook a second project in 2015 where we sought to employ two adults with intellectual disabilities as co-researchers I invited Mason to become one of them The research was about the experiences of middle to older age adults with intellectual disabilities Mason helped shape the interview questions and interviewed other local adults

On completion of the project I was keen to stay in touch with Mason as he had shown a strong passion for making a positive difference and had similar interests to me in gadgets and football I successfully applied for a small impact grant to co-establish a disability platform to maintain linkages with Mason and other local disabled people and their representative organisations This enabled us to fund workshops and seminars with people we had met in previous projects including Mason

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 153

The members helped to co-produce the activities of the platform Mason co-presented findings from our previous project at the launch The grant also enabled us to build international connections with the colleagues in Norway with whom we are writing this paper

Payment for members became an issue as the University refused to pay for vouchers over the long-term and monetary payment provided obstacles to some membersrsquo disability benefits I bought Mason an iPad as payment in lieu Funding cuts began to put constraints on the advocate-facilitators who often missed meetings due to other urgent commitments reminding us that inclusive research relationships are a precarious resource to manage Despite this in 2017 the platform helped inform a successful national research council grant proposal Mason continues to advise on the design of this project and the platform supports the local relationships involved

4 England Co-researcher MasonA colleague of Danny and Mason interviewed Mason audio-recording his answers and translating them into a narrative account She sent this to him to check and double checked again when they met whether he wanted any changes

I first got to know Danny through the advocacy organisation when he came to a meeting to talk about the research A lot of us volunteered It was about places and towns and what you did We ended up presenting the research at the town hall together I think wersquove worked together since 2012

I thought I could work with Danny because of his enthusiasm for research Hersquos got an approachable nature Thinking back to the beginning he made it interesting We had pocket cameras to take pictures of things that meant something to us When he came back with another project idea I thought yeah go for it Wersquove got to know each othermdashhe builds bonds with people He allows you to speak and put your ideasmdashyour frustration at whatrsquos going wrong

Itrsquos good now to work with people from the University thatrsquos really interesting and meeting people from People First itrsquos not all rosy for them but they have big social events For me now moneyrsquos really tight so I donrsquot get out so much The research work has been paid through vouchers which has helped me get some electricals and Dannyrsquos putting money towards a device Danny is good in that way Trips over to the University mean I get to see whatrsquos going on The topics that Danny has come up with have been very interesting and important If someone new asked me to do research I would be interested If you think about it before 2012 Irsquod never met Danny

5 England Academic researcher LucyLucy narrated her experience but co-researcher Emily opted not to contribute her account

Our three-year project was focused on researching the co-production of an inclusive archive of intellectual disability history We secured funding to build a research team that included academics two post-doctoral researchers and an intellectually disabled researcher

This was the first time a UK University had research council funding to employ an intellectually disabled researcher on the same terms and conditions as a post-doctoral researcher The aim was both political and ethical We wanted to demonstrate the value of lived experience and set a precedent for intellectually disabled people to be remunerated fairly for their contributions in academic research It was to signal equality in employment rights but also equality in research relationships The project also had funds to pay a personal assistant for the disabled researcher

Things got off to a shaky start The University required persuading that the project should advertise specifically for a researcher with intellectual disabilities and that its standard recruitment materials and processes needed adaptation to make them accessible this delayed the project start date by months

Eventually we pulled together the core team and hired Emily our intellectually disabled researcher Although Emily did not have much research or self-advocacy experience she was passionate about history and making information accessible While we were in the process of recruiting Emilyrsquos personal assistant support was provided by Anne one of the post-doctoral researchers They worked very closely undertaking an inclusive literature review designing workshops and promoting the project at conferences Much of this was new to Emily who required a lot of support including emotional support She was quite anxious in these first few months They developed a close rapport prompting innovative work as the project progressed

My own relationship with Emily developed more slowly Much of my time on the project involved administrative financial or management issues Delays to the project start date and early team meetings that Emily did not find accessible created tensions which I felt a responsibility to resolve The three researchers (along with Emilyrsquos assistant once she was in place) developed strong working relationships and became lsquoa team within a teamrsquo They spent time together and communicated regularly by Skype My perception was that challenges in managing the work between them were dealt with sensitively kindly and with good humour Emily and Anne both had a strong interest in involving people with profound and multiple intellectual disabilities in the archive and led this strand of work

When Emilyrsquos personal assistant left a few weeks before the end of the project Anne and I agreed with Emily to cover the support role between us By that stage Emily was confident in the job We worked together productively analysing data co-writing an article and organisingarchiving the project material We ate lunch together and talked about our lives our families and our holiday plans Emily still referred to me as lsquothe bossrsquo (a nickname she coined in the first few weeks) but our relationship changed I experienced that with calmness and time co-researching can be a

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts154

hugely stimulating creative and enjoyable process I reflected that much of my time on the project had been focused on schedules and outputs and this had influenced my interactions with Emily Irsquom pleased that we had the opportunity to redress this towards the end I only wished wersquod had the chance to do it earlier

DiscussionThe five research partnerships that form our narrative data sit on a spectrummdashfrom a friendship which blossomed into a writing partnership (1) through to a full blown salaried research post and boss-employee relationship (5) In between was one collaboration which started as a service provider-client relationship and migrated into a friendly research relationship (2) and two where academic researchers talent spotted people who had previously been involved in self-advocacy or research (3 and 4) Four of the five relationships are medium to long term spanning several different projects Only the fifth where the researcher was salaried was confined to one three-year project ending thereafter

Our purpose in gathering and analysing the narratives was to reflect upon ways to foster relationships which support inclusive alongsider research where academics work alongside researchers with intellectual disabilities in conducting research and to ask what supports such relationships It was prompted by the absence of self-advocacy or user-led organisations in Norway to partner academics seeking to do inclusive research The narratives indicate a range of ways to initiate alongsider research relationships Other than in 5 no formal interview scrutiny of skills or qualifications is mentioned Pre-existing relationships were sufficient for the academic to ask an intellectually disabled person to work alongside them These pre-existing relationships came from friend-friend staff-client or researcher-researched beginnings and therefore they had to evolve and transform to become alongside in nature Only in 4 did the co-researcher come from an established advocacy organisation and even there it was based on a personal relationship While self-advocacy groups could not be the route to growing intellectually disabled researchers in Norway in one of the Norwegian examples (2) the opposite was true and research involvement grew a kind of self-advocacy group

In four of the five examples relationships grew organically The relative informality of the projects made this possible and there are lessons for others in this The difference from 5 is striking Emily was appointed through a formal selection process to a salaried post Timescales meant that the relationship could not evolve organically in the same way and the sense of feeling alongside each other was quite different

The five accounts show that building alongsider research relationships is a slow burn something also commented upon by many practitioners of inclusive research including most recently Frankena et al (2019) The personal dimension is central to this slow development The academic researcher is described variously as lsquokindrsquo lsquogentlersquo lsquonicersquo frequently but not always providing friendship as well as a professional relationship Reciprocity is stressed as are common interests They enjoy one anotherrsquos company share time out together Shared interests and fun positive experiences help to consolidate the relationships There is also an element of caring through small acts which helps sustain affection and trust These elements help sustain the relationships in the absence of funding In 5 this is less clear because we do not hear from Emily who declined to contribute having moved on since her employment as a researcher had ended

The external context plays an important part Often relationships started off informally but in the English examples particularly finances for continued research played a part in sustaining the relationship However it is Dannyrsquos personal qualities and commitment not money that encouraged Mason to think he would like to do more research The relationship in 5 survived as long as Emily was employed as a researcher Beyond the end of the project Emily was happy to be friendly have a coffee or a chat but not to put in unpaid work writing for this paper One might describe this as a more instrumental relationship

Working alongside each other the need for support always needs to be tailored to the situation In the Norwegian examples practical support is provided by the academic researchers perhaps influenced by their previous support roles prior to the research In the English examples practical support is ostensibly paid for separately from the academic research role Nevertheless in both academic researchers played a critical role in creating and sustaining the relationships Whatever form inclusive research takes with or without the support of an advocacy organisation or other staff support is inherent to the relationships it cannot be fully outsourced to personal assistants or others

Other than in 5 the research experience began with the researcher with intellectual disabilities reflecting on his or her own life In 2 3 and 4 they gradually migrated to considering other aspects of the lives of people with intellectual disabilities sometimes on matters of which they had no direct experience 5 was again different Emily was appointed because she showed a passionate interest in history at her interview and she was highly motivated to explore issues of consent because she could see how they impacted on people she knew well

In returning to Carrollrsquos (2009) concept of the alongsider we observe that in the literature on the process of doing research inclusively authors have mostly focussed on the dynamics of working alongside each other as researchers and for more activist research standing alongside each other in solidarity This reflects the much-rehearsed questions about who the research is with by and for The narratives in this paper though more illustrate Carrollrsquos dimension of feeling alongside being enjoyed by the people on both sides of the relationship This came through the longevity of many of the relationships and appeared to grow as the relationship grew Moreover this supported the transition into new research projects We suggest that the alongsider concept merits further attention in work developing and examining the added value of inclusive research

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts150

Narrative Accounts of Relationship Building in Inclusive Research1 Norway Shared perspectives from Brittany and AnnaThis part is written together by the academic Brittany and the co-researcher Anna based on extracts from a book they wrote together

We have known each other since we grew up in the same neighbourhood Brittany knew that Anna had many friends was good at telling stories and was a good team player The conversations we had about friendship became a good start for us to write a book It was important for us to decide together how the book would be Neither could write the book alone Annarsquos job was to decide what stories the book should contain Brittanyrsquos job was to encourage Anna to gather her experiences and feelings into words

Initially we sound-recorded our conversations The idea was that Brittany should write what Anna said and read it back Brittany wrote about what Anna said but we realised that we wanted the book to be Annarsquos words and not what Brittany wrote about her We came on track when Brittany started writing while Anna spoke about her experiences Anna corrected and edited the text Anna had a printed manuscript but she wanted us to read the text together as that made it easier to understand and to change Every time we met to write we re-read what we wrote last time This gave Anna ideas for new stories

Often it was easier to work with the book and make important contributions when we were together for several days The cooperation gave us the opportunity to experience something good together When we did things we liked it was easier to work on the book

The staff in Annarsquos home were helpful when we planned writing trips Anna advised them when we were going to travel and where and the staff helped her with packing and getting on the train However if Anna came home after ten orsquoclock in the evening her father had to collect her from the station as there was only one person at work

During the writing process there were new experiences that Anna felt insecure about However when she chose pictures for the book she was quite sure which pictures she wanted People who know her say that she became more confident after the writing started

Sometimes it was difficult for Anna to find words When she was completely stuck Brittany made suggestions but Anna always found her own way of saying it When we read large sections of the book together we often found more changes we had to make Anna would say lsquoIt was not quite the way it wasrsquo and Brittany would ask lsquoWhat do you want me to write insteadrsquo

Brittany had once been Annarsquos service provider but it was important that Brittany was not Annarsquos staff when we wrote the book it made it easier to be honest Because we know each other well it was hard to find the boundary for what was right to share with everyone We asked for other peoplersquos opinions in such situations At the beginning Anna decided where the different stories should be in the book but in the end Brittany did the last rounds of editing and text placement She never changed the content without Annarsquos agreement Anna read and approved each word in the book

Anna was the driver behind getting the book done We are a good team Our respect and love for each other increased in line with each new page we wrote together We still work together with research and presentations and we are still very good friends We talk almost every week Anna is an important discussion partner in many things Brittany is doing as a teacher and researcher

1 Norway Co-researcher AnnaA trusted staff member conducted this interview with Anna The interview was transcribed verbatim and translated to English

What made you say lsquoyesrsquo to work together with Brittany this time She asked me I wanted to continue the collaboration and try something new

Is there anything you want to say about Brittany that you think is important for others to know about I think we enjoy working together We travel together We have good time together We are active together We call each other She is nice to talk with It is easy to keep in touch with her It is always exciting when we are together I experience many new things together with Brittany I enjoy being together with her We work in a cafeacute I like that

What do you think the collaboration has been like Very good We know each other very well We have close contactIs anything boring or difficult about the collaboration No We both come up with suggestions I have good ideas and

she has good ideas We cooperate I am interested in the same things as her We exchange and take up matters Irsquom happy with that We never disagree We solve things together Irsquom not afraid to say either We have the same values She is important to me

2 Norway Academic researcher YvonneI met Oliver a few years ago while working at a supported living facility for people with intellectual disabilities We discovered we had a lot in common and enjoyed spending time together I got to know Oliverrsquos wishes for the future and I started to think about doing research together with people with intellectual disabilities to explore everyday life topics together

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 151

Conversations with Oliver and his curiosity to explore some topics inspired a research project application This emphasised inclusive research and exploration of the issues of relevance for the everyday lives of people with intellectual disabilities initiated by them

In the project I worked with two groups and Oliver was a member of one of them I did not approach him directly but through staff because I did not want to influence his decision This was due to ethical considerations but could be perceived as paternalistic In both groups we worked within the framework of participatory action research with emphasis on cooperation and co-production We talked about our lives mundane activities throughout the day leisure activities etc before we discussed the topics we in the group wanted to explore together Oliver was an active contributor and mentioned some of the same issues we were talking about when we first met a few years ago

I hoped that researching together might bring different perspectives on the topics and give some answers to the co-researcher as well Even though I knew Oliver well I could not be sure if this way of working together would fit us or if it would put our relationship at risk Nevertheless it was important to try Knowing each other before the start of the project could be both a plus and a minus It was important to reflect on this before and during the project I discussed the pros and cons ethics moral actions and vulnerability in colleague supervision

My relationship with Oliver changed and probably grew stronger during the project We are now both colleagues and friends We went from email communication including one or two staff to direct email communication between just the two of us I was anxious initially but I am now sure that it was right to include Oliver as he is now participating in new projects and still enjoys research very much I did not want to put our relationship at risk and did not want to cause Oliver any trouble or harm There were many layers of both risks and gains responsibility power imbalance having faith in the co-researcher and willingness to change our relationship His lsquoIrsquom already looking forward to the next meetingrsquo was reassuring

The research group developed and grew into a version of a self-advocacy group In addition to researching we discussed other issues brought up by members such as how to tell support staff what they do not like or how to approach a specific problem Researchersrsquo relationships have many functions not only as researchers and colleagues but also as supporting staff and friends When it comes to my relationship with Oliver the original project has ended He is now taking part in two new projects and thriving in the role of researcher

2 Norway Co-researcher OliverYvonnersquos colleague conducted the interview on which this is based The interview was recorded and transcribed verbatim This is taken from the transcript

I got to know Yvonne when she started to work where I live She worked there for a while She is nice and kind I do not remember when it was but it has been a while Yvonne is very kind nice listens to people likes to help people and respects people very helpful and good you can trust her and feel safe During the time Yvonne worked at my supported living facilities we spent time together during the day and sometimes in the afternoon after 3 pm We did different things together mostly everyday life stuff

When it came to the project Yvonne asked my contact people then they asked me if I wanted to participate and I said yes I have not regretted No it went very well It was not easy all the time but it went very well We talked about how it is to live in places how we are on a daily basis how we feel and different stuff I think it was very good it was positive and pleasant to meet other people I was very nervous the first time and afraid Nothing was difficult Everything went well It was nice We asked questions and wrote down how things were Everybody got to say what they meant how they felt what they thought There was nothing I thought of as difficult Everything went well When it comes to how we decided the topics Yvonne came up with some ideas at first then we had ideas about what we wanted to say It was both Yvonne and us I do not remember everything I said but I said quite a few things during the research project I do not think we could have spoken about other topics I do not know what it could be We always agreed I like to be with Yvonne it feels like you can be yourself and it feels as if you can trust Yvonne and feel safe so you think you can be open and be yourself I really enjoy being with the researcher I trust Yvonne so it is very nice

3 Norway Academic researcher JuneI met Mike when I was interviewing persons with intellectual disabilities about self-determination His level of reflection interested me he discussed different views of the situations in filmed vignettes and related these to his own life both the similarities and differences

In a new project I had to recruit a co-researcher and Mike was the first to come to mind Mike was very interested He said yes and we became a team We travelled together to meetings staying at hotels Sometimes we also met other participants in the evenings but on several occasions it was only Mike and me This brought us quite close getting to know each other well During dinners we discussed politics football news and how we liked to live our lives We talked a lot Since we did not bring an assistant I helped Mike in matters like medical assistance and booking tickets

At the time when we got funding for a second project I moved to another part of the country Nevertheless I continued as the project manager and met Mike quite often We also talked by phone It was sad to split the team but we were both pleased to meet in project meetings The last year of the second project we were invited into a third project about assistive technology

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts152

Mike and I have worked together since 2011 in three different projects also lecturing together and collaborating in translating official documents into an easy read He is remunerated for his work

Although I assisted Mike when travelling we agreed that I would not be like his assistant but a colleague We talked about colleagues helping each other This has worked both ways Once I ordered a wrong ticket for the plane luckily Mike discovered that and told me Sometimes we quarrel and bicker but we also talk a lot and laugh a lot we are partners

When we worked on two parallel and quite similar projects I think it sometimes was too much for Mike But now that the third project is ending he thinks it is too little He says that as long as he can work with me he will

This is a long-lasting relationship that has given both of us insight into each otherrsquos lives and we have found good ways for collaborating We learn from each other and we know each otherrsquos difficulties and priorities It is also about a personrsquos experiences of being empowered by participation in research and being a teacher As Mike answered when he was asked about his participation lsquoIt feels good to be a part of societyrsquo

3 Norway Co-researcher MikeJunersquos colleague interviewed Mike writing down his answers June went through the transcript with Mike He also read Junersquos narrative and asked her to change one part

We got to know each other in 2011 I was interviewed about a film and if I thought that the person in the film was self-determined or not Later I was asked to participate in a research project I thought why not And I said yes because it is nice to get out of day-care centres and try another kind of work I think it was June that asked me because she thought of me

The first two projects co-researchers participated because they knew how it was to receive help at home The last project I had to think a lot about It was about not being able to talk and having assistive technology Because they were without spoken language it was not quite me Then I thought about a friend of mine who I have known for some years He has lost some of his language and sometimes uses a wheelchair That experience made me say yes

I think June is a cracking good research manager and mentor She is very smiley nice and easy to get to knowWe collaborated about analyses in the projects And we have planned travels hotels and budgets I need some help

with my budget and travels for our meetings and conferences I think our collaboration is nice We take everything with a smile and make things work

I cannot really come up with anything that is boring or difficult It can be cumbersome after June moved to another part of the country Because then I do not travel together with her and we have to find other ways Sometimes it is hard to participate difficult or boring if I do not manage It might be analysing Or talking about the same things over again

She is the researcher and decides what we should do and then I have to answer if I agree and then we start It might be that she starts and then I get going and then I also decide You know that is her motto Self-determination

[Are you interested in continuing cooperation with June] Yes yes yes absolutelyEveryone has the right to have different opinions Neither of us wants to start a conflict if we disagree Maybe she

finds another way to explain to make me reconsider She helps me to formulate my thoughts in another way to think more carefully about things First I disagree than she says something and I think lsquothat is okrsquo If she disagrees with me she says things that make it easier for me to reformulate But thatrsquos not the same way with others With another one I can be stuck more than necessary June is cracking good in helping me to think more about things I need a couple of conversations to think more about things How to say things if something is wrong how to do that

[Why it is important for you to cooperate with her] To manage to function in all projects and whatever we do to make me function How we work together It is extra extra important to work together with her after she moved To maintain our contact so it does not fade I do not want to lose our contact

4 England Academic researcher DannyIn 2012ndash2013 I undertook a study with another researcher to explore what welcoming communities look like for adults with intellectual disabilities We began working with a local advocacy organisation and a core group of four adults with intellectual disabilities to record their experiences over a year We conducted repeat focus groups which enabled us to build relationships with each participant We also gave everyone disposable cameras to photograph the places where they liked spending time One of the participants Mason shared his experiences of going to football games saying he felt he lsquofitted inrsquo as a fan At the final meetings we co-produced the analysis and an exhibition of the photographs and findings Mason was actively involved suggesting ways to generate publicity and ideas for the venue

We undertook a second project in 2015 where we sought to employ two adults with intellectual disabilities as co-researchers I invited Mason to become one of them The research was about the experiences of middle to older age adults with intellectual disabilities Mason helped shape the interview questions and interviewed other local adults

On completion of the project I was keen to stay in touch with Mason as he had shown a strong passion for making a positive difference and had similar interests to me in gadgets and football I successfully applied for a small impact grant to co-establish a disability platform to maintain linkages with Mason and other local disabled people and their representative organisations This enabled us to fund workshops and seminars with people we had met in previous projects including Mason

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 153

The members helped to co-produce the activities of the platform Mason co-presented findings from our previous project at the launch The grant also enabled us to build international connections with the colleagues in Norway with whom we are writing this paper

Payment for members became an issue as the University refused to pay for vouchers over the long-term and monetary payment provided obstacles to some membersrsquo disability benefits I bought Mason an iPad as payment in lieu Funding cuts began to put constraints on the advocate-facilitators who often missed meetings due to other urgent commitments reminding us that inclusive research relationships are a precarious resource to manage Despite this in 2017 the platform helped inform a successful national research council grant proposal Mason continues to advise on the design of this project and the platform supports the local relationships involved

4 England Co-researcher MasonA colleague of Danny and Mason interviewed Mason audio-recording his answers and translating them into a narrative account She sent this to him to check and double checked again when they met whether he wanted any changes

I first got to know Danny through the advocacy organisation when he came to a meeting to talk about the research A lot of us volunteered It was about places and towns and what you did We ended up presenting the research at the town hall together I think wersquove worked together since 2012

I thought I could work with Danny because of his enthusiasm for research Hersquos got an approachable nature Thinking back to the beginning he made it interesting We had pocket cameras to take pictures of things that meant something to us When he came back with another project idea I thought yeah go for it Wersquove got to know each othermdashhe builds bonds with people He allows you to speak and put your ideasmdashyour frustration at whatrsquos going wrong

Itrsquos good now to work with people from the University thatrsquos really interesting and meeting people from People First itrsquos not all rosy for them but they have big social events For me now moneyrsquos really tight so I donrsquot get out so much The research work has been paid through vouchers which has helped me get some electricals and Dannyrsquos putting money towards a device Danny is good in that way Trips over to the University mean I get to see whatrsquos going on The topics that Danny has come up with have been very interesting and important If someone new asked me to do research I would be interested If you think about it before 2012 Irsquod never met Danny

5 England Academic researcher LucyLucy narrated her experience but co-researcher Emily opted not to contribute her account

Our three-year project was focused on researching the co-production of an inclusive archive of intellectual disability history We secured funding to build a research team that included academics two post-doctoral researchers and an intellectually disabled researcher

This was the first time a UK University had research council funding to employ an intellectually disabled researcher on the same terms and conditions as a post-doctoral researcher The aim was both political and ethical We wanted to demonstrate the value of lived experience and set a precedent for intellectually disabled people to be remunerated fairly for their contributions in academic research It was to signal equality in employment rights but also equality in research relationships The project also had funds to pay a personal assistant for the disabled researcher

Things got off to a shaky start The University required persuading that the project should advertise specifically for a researcher with intellectual disabilities and that its standard recruitment materials and processes needed adaptation to make them accessible this delayed the project start date by months

Eventually we pulled together the core team and hired Emily our intellectually disabled researcher Although Emily did not have much research or self-advocacy experience she was passionate about history and making information accessible While we were in the process of recruiting Emilyrsquos personal assistant support was provided by Anne one of the post-doctoral researchers They worked very closely undertaking an inclusive literature review designing workshops and promoting the project at conferences Much of this was new to Emily who required a lot of support including emotional support She was quite anxious in these first few months They developed a close rapport prompting innovative work as the project progressed

My own relationship with Emily developed more slowly Much of my time on the project involved administrative financial or management issues Delays to the project start date and early team meetings that Emily did not find accessible created tensions which I felt a responsibility to resolve The three researchers (along with Emilyrsquos assistant once she was in place) developed strong working relationships and became lsquoa team within a teamrsquo They spent time together and communicated regularly by Skype My perception was that challenges in managing the work between them were dealt with sensitively kindly and with good humour Emily and Anne both had a strong interest in involving people with profound and multiple intellectual disabilities in the archive and led this strand of work

When Emilyrsquos personal assistant left a few weeks before the end of the project Anne and I agreed with Emily to cover the support role between us By that stage Emily was confident in the job We worked together productively analysing data co-writing an article and organisingarchiving the project material We ate lunch together and talked about our lives our families and our holiday plans Emily still referred to me as lsquothe bossrsquo (a nickname she coined in the first few weeks) but our relationship changed I experienced that with calmness and time co-researching can be a

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts154

hugely stimulating creative and enjoyable process I reflected that much of my time on the project had been focused on schedules and outputs and this had influenced my interactions with Emily Irsquom pleased that we had the opportunity to redress this towards the end I only wished wersquod had the chance to do it earlier

DiscussionThe five research partnerships that form our narrative data sit on a spectrummdashfrom a friendship which blossomed into a writing partnership (1) through to a full blown salaried research post and boss-employee relationship (5) In between was one collaboration which started as a service provider-client relationship and migrated into a friendly research relationship (2) and two where academic researchers talent spotted people who had previously been involved in self-advocacy or research (3 and 4) Four of the five relationships are medium to long term spanning several different projects Only the fifth where the researcher was salaried was confined to one three-year project ending thereafter

Our purpose in gathering and analysing the narratives was to reflect upon ways to foster relationships which support inclusive alongsider research where academics work alongside researchers with intellectual disabilities in conducting research and to ask what supports such relationships It was prompted by the absence of self-advocacy or user-led organisations in Norway to partner academics seeking to do inclusive research The narratives indicate a range of ways to initiate alongsider research relationships Other than in 5 no formal interview scrutiny of skills or qualifications is mentioned Pre-existing relationships were sufficient for the academic to ask an intellectually disabled person to work alongside them These pre-existing relationships came from friend-friend staff-client or researcher-researched beginnings and therefore they had to evolve and transform to become alongside in nature Only in 4 did the co-researcher come from an established advocacy organisation and even there it was based on a personal relationship While self-advocacy groups could not be the route to growing intellectually disabled researchers in Norway in one of the Norwegian examples (2) the opposite was true and research involvement grew a kind of self-advocacy group

In four of the five examples relationships grew organically The relative informality of the projects made this possible and there are lessons for others in this The difference from 5 is striking Emily was appointed through a formal selection process to a salaried post Timescales meant that the relationship could not evolve organically in the same way and the sense of feeling alongside each other was quite different

The five accounts show that building alongsider research relationships is a slow burn something also commented upon by many practitioners of inclusive research including most recently Frankena et al (2019) The personal dimension is central to this slow development The academic researcher is described variously as lsquokindrsquo lsquogentlersquo lsquonicersquo frequently but not always providing friendship as well as a professional relationship Reciprocity is stressed as are common interests They enjoy one anotherrsquos company share time out together Shared interests and fun positive experiences help to consolidate the relationships There is also an element of caring through small acts which helps sustain affection and trust These elements help sustain the relationships in the absence of funding In 5 this is less clear because we do not hear from Emily who declined to contribute having moved on since her employment as a researcher had ended

The external context plays an important part Often relationships started off informally but in the English examples particularly finances for continued research played a part in sustaining the relationship However it is Dannyrsquos personal qualities and commitment not money that encouraged Mason to think he would like to do more research The relationship in 5 survived as long as Emily was employed as a researcher Beyond the end of the project Emily was happy to be friendly have a coffee or a chat but not to put in unpaid work writing for this paper One might describe this as a more instrumental relationship

Working alongside each other the need for support always needs to be tailored to the situation In the Norwegian examples practical support is provided by the academic researchers perhaps influenced by their previous support roles prior to the research In the English examples practical support is ostensibly paid for separately from the academic research role Nevertheless in both academic researchers played a critical role in creating and sustaining the relationships Whatever form inclusive research takes with or without the support of an advocacy organisation or other staff support is inherent to the relationships it cannot be fully outsourced to personal assistants or others

Other than in 5 the research experience began with the researcher with intellectual disabilities reflecting on his or her own life In 2 3 and 4 they gradually migrated to considering other aspects of the lives of people with intellectual disabilities sometimes on matters of which they had no direct experience 5 was again different Emily was appointed because she showed a passionate interest in history at her interview and she was highly motivated to explore issues of consent because she could see how they impacted on people she knew well

In returning to Carrollrsquos (2009) concept of the alongsider we observe that in the literature on the process of doing research inclusively authors have mostly focussed on the dynamics of working alongside each other as researchers and for more activist research standing alongside each other in solidarity This reflects the much-rehearsed questions about who the research is with by and for The narratives in this paper though more illustrate Carrollrsquos dimension of feeling alongside being enjoyed by the people on both sides of the relationship This came through the longevity of many of the relationships and appeared to grow as the relationship grew Moreover this supported the transition into new research projects We suggest that the alongsider concept merits further attention in work developing and examining the added value of inclusive research

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 151

Conversations with Oliver and his curiosity to explore some topics inspired a research project application This emphasised inclusive research and exploration of the issues of relevance for the everyday lives of people with intellectual disabilities initiated by them

In the project I worked with two groups and Oliver was a member of one of them I did not approach him directly but through staff because I did not want to influence his decision This was due to ethical considerations but could be perceived as paternalistic In both groups we worked within the framework of participatory action research with emphasis on cooperation and co-production We talked about our lives mundane activities throughout the day leisure activities etc before we discussed the topics we in the group wanted to explore together Oliver was an active contributor and mentioned some of the same issues we were talking about when we first met a few years ago

I hoped that researching together might bring different perspectives on the topics and give some answers to the co-researcher as well Even though I knew Oliver well I could not be sure if this way of working together would fit us or if it would put our relationship at risk Nevertheless it was important to try Knowing each other before the start of the project could be both a plus and a minus It was important to reflect on this before and during the project I discussed the pros and cons ethics moral actions and vulnerability in colleague supervision

My relationship with Oliver changed and probably grew stronger during the project We are now both colleagues and friends We went from email communication including one or two staff to direct email communication between just the two of us I was anxious initially but I am now sure that it was right to include Oliver as he is now participating in new projects and still enjoys research very much I did not want to put our relationship at risk and did not want to cause Oliver any trouble or harm There were many layers of both risks and gains responsibility power imbalance having faith in the co-researcher and willingness to change our relationship His lsquoIrsquom already looking forward to the next meetingrsquo was reassuring

The research group developed and grew into a version of a self-advocacy group In addition to researching we discussed other issues brought up by members such as how to tell support staff what they do not like or how to approach a specific problem Researchersrsquo relationships have many functions not only as researchers and colleagues but also as supporting staff and friends When it comes to my relationship with Oliver the original project has ended He is now taking part in two new projects and thriving in the role of researcher

2 Norway Co-researcher OliverYvonnersquos colleague conducted the interview on which this is based The interview was recorded and transcribed verbatim This is taken from the transcript

I got to know Yvonne when she started to work where I live She worked there for a while She is nice and kind I do not remember when it was but it has been a while Yvonne is very kind nice listens to people likes to help people and respects people very helpful and good you can trust her and feel safe During the time Yvonne worked at my supported living facilities we spent time together during the day and sometimes in the afternoon after 3 pm We did different things together mostly everyday life stuff

When it came to the project Yvonne asked my contact people then they asked me if I wanted to participate and I said yes I have not regretted No it went very well It was not easy all the time but it went very well We talked about how it is to live in places how we are on a daily basis how we feel and different stuff I think it was very good it was positive and pleasant to meet other people I was very nervous the first time and afraid Nothing was difficult Everything went well It was nice We asked questions and wrote down how things were Everybody got to say what they meant how they felt what they thought There was nothing I thought of as difficult Everything went well When it comes to how we decided the topics Yvonne came up with some ideas at first then we had ideas about what we wanted to say It was both Yvonne and us I do not remember everything I said but I said quite a few things during the research project I do not think we could have spoken about other topics I do not know what it could be We always agreed I like to be with Yvonne it feels like you can be yourself and it feels as if you can trust Yvonne and feel safe so you think you can be open and be yourself I really enjoy being with the researcher I trust Yvonne so it is very nice

3 Norway Academic researcher JuneI met Mike when I was interviewing persons with intellectual disabilities about self-determination His level of reflection interested me he discussed different views of the situations in filmed vignettes and related these to his own life both the similarities and differences

In a new project I had to recruit a co-researcher and Mike was the first to come to mind Mike was very interested He said yes and we became a team We travelled together to meetings staying at hotels Sometimes we also met other participants in the evenings but on several occasions it was only Mike and me This brought us quite close getting to know each other well During dinners we discussed politics football news and how we liked to live our lives We talked a lot Since we did not bring an assistant I helped Mike in matters like medical assistance and booking tickets

At the time when we got funding for a second project I moved to another part of the country Nevertheless I continued as the project manager and met Mike quite often We also talked by phone It was sad to split the team but we were both pleased to meet in project meetings The last year of the second project we were invited into a third project about assistive technology

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts152

Mike and I have worked together since 2011 in three different projects also lecturing together and collaborating in translating official documents into an easy read He is remunerated for his work

Although I assisted Mike when travelling we agreed that I would not be like his assistant but a colleague We talked about colleagues helping each other This has worked both ways Once I ordered a wrong ticket for the plane luckily Mike discovered that and told me Sometimes we quarrel and bicker but we also talk a lot and laugh a lot we are partners

When we worked on two parallel and quite similar projects I think it sometimes was too much for Mike But now that the third project is ending he thinks it is too little He says that as long as he can work with me he will

This is a long-lasting relationship that has given both of us insight into each otherrsquos lives and we have found good ways for collaborating We learn from each other and we know each otherrsquos difficulties and priorities It is also about a personrsquos experiences of being empowered by participation in research and being a teacher As Mike answered when he was asked about his participation lsquoIt feels good to be a part of societyrsquo

3 Norway Co-researcher MikeJunersquos colleague interviewed Mike writing down his answers June went through the transcript with Mike He also read Junersquos narrative and asked her to change one part

We got to know each other in 2011 I was interviewed about a film and if I thought that the person in the film was self-determined or not Later I was asked to participate in a research project I thought why not And I said yes because it is nice to get out of day-care centres and try another kind of work I think it was June that asked me because she thought of me

The first two projects co-researchers participated because they knew how it was to receive help at home The last project I had to think a lot about It was about not being able to talk and having assistive technology Because they were without spoken language it was not quite me Then I thought about a friend of mine who I have known for some years He has lost some of his language and sometimes uses a wheelchair That experience made me say yes

I think June is a cracking good research manager and mentor She is very smiley nice and easy to get to knowWe collaborated about analyses in the projects And we have planned travels hotels and budgets I need some help

with my budget and travels for our meetings and conferences I think our collaboration is nice We take everything with a smile and make things work

I cannot really come up with anything that is boring or difficult It can be cumbersome after June moved to another part of the country Because then I do not travel together with her and we have to find other ways Sometimes it is hard to participate difficult or boring if I do not manage It might be analysing Or talking about the same things over again

She is the researcher and decides what we should do and then I have to answer if I agree and then we start It might be that she starts and then I get going and then I also decide You know that is her motto Self-determination

[Are you interested in continuing cooperation with June] Yes yes yes absolutelyEveryone has the right to have different opinions Neither of us wants to start a conflict if we disagree Maybe she

finds another way to explain to make me reconsider She helps me to formulate my thoughts in another way to think more carefully about things First I disagree than she says something and I think lsquothat is okrsquo If she disagrees with me she says things that make it easier for me to reformulate But thatrsquos not the same way with others With another one I can be stuck more than necessary June is cracking good in helping me to think more about things I need a couple of conversations to think more about things How to say things if something is wrong how to do that

[Why it is important for you to cooperate with her] To manage to function in all projects and whatever we do to make me function How we work together It is extra extra important to work together with her after she moved To maintain our contact so it does not fade I do not want to lose our contact

4 England Academic researcher DannyIn 2012ndash2013 I undertook a study with another researcher to explore what welcoming communities look like for adults with intellectual disabilities We began working with a local advocacy organisation and a core group of four adults with intellectual disabilities to record their experiences over a year We conducted repeat focus groups which enabled us to build relationships with each participant We also gave everyone disposable cameras to photograph the places where they liked spending time One of the participants Mason shared his experiences of going to football games saying he felt he lsquofitted inrsquo as a fan At the final meetings we co-produced the analysis and an exhibition of the photographs and findings Mason was actively involved suggesting ways to generate publicity and ideas for the venue

We undertook a second project in 2015 where we sought to employ two adults with intellectual disabilities as co-researchers I invited Mason to become one of them The research was about the experiences of middle to older age adults with intellectual disabilities Mason helped shape the interview questions and interviewed other local adults

On completion of the project I was keen to stay in touch with Mason as he had shown a strong passion for making a positive difference and had similar interests to me in gadgets and football I successfully applied for a small impact grant to co-establish a disability platform to maintain linkages with Mason and other local disabled people and their representative organisations This enabled us to fund workshops and seminars with people we had met in previous projects including Mason

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 153

The members helped to co-produce the activities of the platform Mason co-presented findings from our previous project at the launch The grant also enabled us to build international connections with the colleagues in Norway with whom we are writing this paper

Payment for members became an issue as the University refused to pay for vouchers over the long-term and monetary payment provided obstacles to some membersrsquo disability benefits I bought Mason an iPad as payment in lieu Funding cuts began to put constraints on the advocate-facilitators who often missed meetings due to other urgent commitments reminding us that inclusive research relationships are a precarious resource to manage Despite this in 2017 the platform helped inform a successful national research council grant proposal Mason continues to advise on the design of this project and the platform supports the local relationships involved

4 England Co-researcher MasonA colleague of Danny and Mason interviewed Mason audio-recording his answers and translating them into a narrative account She sent this to him to check and double checked again when they met whether he wanted any changes

I first got to know Danny through the advocacy organisation when he came to a meeting to talk about the research A lot of us volunteered It was about places and towns and what you did We ended up presenting the research at the town hall together I think wersquove worked together since 2012

I thought I could work with Danny because of his enthusiasm for research Hersquos got an approachable nature Thinking back to the beginning he made it interesting We had pocket cameras to take pictures of things that meant something to us When he came back with another project idea I thought yeah go for it Wersquove got to know each othermdashhe builds bonds with people He allows you to speak and put your ideasmdashyour frustration at whatrsquos going wrong

Itrsquos good now to work with people from the University thatrsquos really interesting and meeting people from People First itrsquos not all rosy for them but they have big social events For me now moneyrsquos really tight so I donrsquot get out so much The research work has been paid through vouchers which has helped me get some electricals and Dannyrsquos putting money towards a device Danny is good in that way Trips over to the University mean I get to see whatrsquos going on The topics that Danny has come up with have been very interesting and important If someone new asked me to do research I would be interested If you think about it before 2012 Irsquod never met Danny

5 England Academic researcher LucyLucy narrated her experience but co-researcher Emily opted not to contribute her account

Our three-year project was focused on researching the co-production of an inclusive archive of intellectual disability history We secured funding to build a research team that included academics two post-doctoral researchers and an intellectually disabled researcher

This was the first time a UK University had research council funding to employ an intellectually disabled researcher on the same terms and conditions as a post-doctoral researcher The aim was both political and ethical We wanted to demonstrate the value of lived experience and set a precedent for intellectually disabled people to be remunerated fairly for their contributions in academic research It was to signal equality in employment rights but also equality in research relationships The project also had funds to pay a personal assistant for the disabled researcher

Things got off to a shaky start The University required persuading that the project should advertise specifically for a researcher with intellectual disabilities and that its standard recruitment materials and processes needed adaptation to make them accessible this delayed the project start date by months

Eventually we pulled together the core team and hired Emily our intellectually disabled researcher Although Emily did not have much research or self-advocacy experience she was passionate about history and making information accessible While we were in the process of recruiting Emilyrsquos personal assistant support was provided by Anne one of the post-doctoral researchers They worked very closely undertaking an inclusive literature review designing workshops and promoting the project at conferences Much of this was new to Emily who required a lot of support including emotional support She was quite anxious in these first few months They developed a close rapport prompting innovative work as the project progressed

My own relationship with Emily developed more slowly Much of my time on the project involved administrative financial or management issues Delays to the project start date and early team meetings that Emily did not find accessible created tensions which I felt a responsibility to resolve The three researchers (along with Emilyrsquos assistant once she was in place) developed strong working relationships and became lsquoa team within a teamrsquo They spent time together and communicated regularly by Skype My perception was that challenges in managing the work between them were dealt with sensitively kindly and with good humour Emily and Anne both had a strong interest in involving people with profound and multiple intellectual disabilities in the archive and led this strand of work

When Emilyrsquos personal assistant left a few weeks before the end of the project Anne and I agreed with Emily to cover the support role between us By that stage Emily was confident in the job We worked together productively analysing data co-writing an article and organisingarchiving the project material We ate lunch together and talked about our lives our families and our holiday plans Emily still referred to me as lsquothe bossrsquo (a nickname she coined in the first few weeks) but our relationship changed I experienced that with calmness and time co-researching can be a

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts154

hugely stimulating creative and enjoyable process I reflected that much of my time on the project had been focused on schedules and outputs and this had influenced my interactions with Emily Irsquom pleased that we had the opportunity to redress this towards the end I only wished wersquod had the chance to do it earlier

DiscussionThe five research partnerships that form our narrative data sit on a spectrummdashfrom a friendship which blossomed into a writing partnership (1) through to a full blown salaried research post and boss-employee relationship (5) In between was one collaboration which started as a service provider-client relationship and migrated into a friendly research relationship (2) and two where academic researchers talent spotted people who had previously been involved in self-advocacy or research (3 and 4) Four of the five relationships are medium to long term spanning several different projects Only the fifth where the researcher was salaried was confined to one three-year project ending thereafter

Our purpose in gathering and analysing the narratives was to reflect upon ways to foster relationships which support inclusive alongsider research where academics work alongside researchers with intellectual disabilities in conducting research and to ask what supports such relationships It was prompted by the absence of self-advocacy or user-led organisations in Norway to partner academics seeking to do inclusive research The narratives indicate a range of ways to initiate alongsider research relationships Other than in 5 no formal interview scrutiny of skills or qualifications is mentioned Pre-existing relationships were sufficient for the academic to ask an intellectually disabled person to work alongside them These pre-existing relationships came from friend-friend staff-client or researcher-researched beginnings and therefore they had to evolve and transform to become alongside in nature Only in 4 did the co-researcher come from an established advocacy organisation and even there it was based on a personal relationship While self-advocacy groups could not be the route to growing intellectually disabled researchers in Norway in one of the Norwegian examples (2) the opposite was true and research involvement grew a kind of self-advocacy group

In four of the five examples relationships grew organically The relative informality of the projects made this possible and there are lessons for others in this The difference from 5 is striking Emily was appointed through a formal selection process to a salaried post Timescales meant that the relationship could not evolve organically in the same way and the sense of feeling alongside each other was quite different

The five accounts show that building alongsider research relationships is a slow burn something also commented upon by many practitioners of inclusive research including most recently Frankena et al (2019) The personal dimension is central to this slow development The academic researcher is described variously as lsquokindrsquo lsquogentlersquo lsquonicersquo frequently but not always providing friendship as well as a professional relationship Reciprocity is stressed as are common interests They enjoy one anotherrsquos company share time out together Shared interests and fun positive experiences help to consolidate the relationships There is also an element of caring through small acts which helps sustain affection and trust These elements help sustain the relationships in the absence of funding In 5 this is less clear because we do not hear from Emily who declined to contribute having moved on since her employment as a researcher had ended

The external context plays an important part Often relationships started off informally but in the English examples particularly finances for continued research played a part in sustaining the relationship However it is Dannyrsquos personal qualities and commitment not money that encouraged Mason to think he would like to do more research The relationship in 5 survived as long as Emily was employed as a researcher Beyond the end of the project Emily was happy to be friendly have a coffee or a chat but not to put in unpaid work writing for this paper One might describe this as a more instrumental relationship

Working alongside each other the need for support always needs to be tailored to the situation In the Norwegian examples practical support is provided by the academic researchers perhaps influenced by their previous support roles prior to the research In the English examples practical support is ostensibly paid for separately from the academic research role Nevertheless in both academic researchers played a critical role in creating and sustaining the relationships Whatever form inclusive research takes with or without the support of an advocacy organisation or other staff support is inherent to the relationships it cannot be fully outsourced to personal assistants or others

Other than in 5 the research experience began with the researcher with intellectual disabilities reflecting on his or her own life In 2 3 and 4 they gradually migrated to considering other aspects of the lives of people with intellectual disabilities sometimes on matters of which they had no direct experience 5 was again different Emily was appointed because she showed a passionate interest in history at her interview and she was highly motivated to explore issues of consent because she could see how they impacted on people she knew well

In returning to Carrollrsquos (2009) concept of the alongsider we observe that in the literature on the process of doing research inclusively authors have mostly focussed on the dynamics of working alongside each other as researchers and for more activist research standing alongside each other in solidarity This reflects the much-rehearsed questions about who the research is with by and for The narratives in this paper though more illustrate Carrollrsquos dimension of feeling alongside being enjoyed by the people on both sides of the relationship This came through the longevity of many of the relationships and appeared to grow as the relationship grew Moreover this supported the transition into new research projects We suggest that the alongsider concept merits further attention in work developing and examining the added value of inclusive research

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts152

Mike and I have worked together since 2011 in three different projects also lecturing together and collaborating in translating official documents into an easy read He is remunerated for his work

Although I assisted Mike when travelling we agreed that I would not be like his assistant but a colleague We talked about colleagues helping each other This has worked both ways Once I ordered a wrong ticket for the plane luckily Mike discovered that and told me Sometimes we quarrel and bicker but we also talk a lot and laugh a lot we are partners

When we worked on two parallel and quite similar projects I think it sometimes was too much for Mike But now that the third project is ending he thinks it is too little He says that as long as he can work with me he will

This is a long-lasting relationship that has given both of us insight into each otherrsquos lives and we have found good ways for collaborating We learn from each other and we know each otherrsquos difficulties and priorities It is also about a personrsquos experiences of being empowered by participation in research and being a teacher As Mike answered when he was asked about his participation lsquoIt feels good to be a part of societyrsquo

3 Norway Co-researcher MikeJunersquos colleague interviewed Mike writing down his answers June went through the transcript with Mike He also read Junersquos narrative and asked her to change one part

We got to know each other in 2011 I was interviewed about a film and if I thought that the person in the film was self-determined or not Later I was asked to participate in a research project I thought why not And I said yes because it is nice to get out of day-care centres and try another kind of work I think it was June that asked me because she thought of me

The first two projects co-researchers participated because they knew how it was to receive help at home The last project I had to think a lot about It was about not being able to talk and having assistive technology Because they were without spoken language it was not quite me Then I thought about a friend of mine who I have known for some years He has lost some of his language and sometimes uses a wheelchair That experience made me say yes

I think June is a cracking good research manager and mentor She is very smiley nice and easy to get to knowWe collaborated about analyses in the projects And we have planned travels hotels and budgets I need some help

with my budget and travels for our meetings and conferences I think our collaboration is nice We take everything with a smile and make things work

I cannot really come up with anything that is boring or difficult It can be cumbersome after June moved to another part of the country Because then I do not travel together with her and we have to find other ways Sometimes it is hard to participate difficult or boring if I do not manage It might be analysing Or talking about the same things over again

She is the researcher and decides what we should do and then I have to answer if I agree and then we start It might be that she starts and then I get going and then I also decide You know that is her motto Self-determination

[Are you interested in continuing cooperation with June] Yes yes yes absolutelyEveryone has the right to have different opinions Neither of us wants to start a conflict if we disagree Maybe she

finds another way to explain to make me reconsider She helps me to formulate my thoughts in another way to think more carefully about things First I disagree than she says something and I think lsquothat is okrsquo If she disagrees with me she says things that make it easier for me to reformulate But thatrsquos not the same way with others With another one I can be stuck more than necessary June is cracking good in helping me to think more about things I need a couple of conversations to think more about things How to say things if something is wrong how to do that

[Why it is important for you to cooperate with her] To manage to function in all projects and whatever we do to make me function How we work together It is extra extra important to work together with her after she moved To maintain our contact so it does not fade I do not want to lose our contact

4 England Academic researcher DannyIn 2012ndash2013 I undertook a study with another researcher to explore what welcoming communities look like for adults with intellectual disabilities We began working with a local advocacy organisation and a core group of four adults with intellectual disabilities to record their experiences over a year We conducted repeat focus groups which enabled us to build relationships with each participant We also gave everyone disposable cameras to photograph the places where they liked spending time One of the participants Mason shared his experiences of going to football games saying he felt he lsquofitted inrsquo as a fan At the final meetings we co-produced the analysis and an exhibition of the photographs and findings Mason was actively involved suggesting ways to generate publicity and ideas for the venue

We undertook a second project in 2015 where we sought to employ two adults with intellectual disabilities as co-researchers I invited Mason to become one of them The research was about the experiences of middle to older age adults with intellectual disabilities Mason helped shape the interview questions and interviewed other local adults

On completion of the project I was keen to stay in touch with Mason as he had shown a strong passion for making a positive difference and had similar interests to me in gadgets and football I successfully applied for a small impact grant to co-establish a disability platform to maintain linkages with Mason and other local disabled people and their representative organisations This enabled us to fund workshops and seminars with people we had met in previous projects including Mason

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 153

The members helped to co-produce the activities of the platform Mason co-presented findings from our previous project at the launch The grant also enabled us to build international connections with the colleagues in Norway with whom we are writing this paper

Payment for members became an issue as the University refused to pay for vouchers over the long-term and monetary payment provided obstacles to some membersrsquo disability benefits I bought Mason an iPad as payment in lieu Funding cuts began to put constraints on the advocate-facilitators who often missed meetings due to other urgent commitments reminding us that inclusive research relationships are a precarious resource to manage Despite this in 2017 the platform helped inform a successful national research council grant proposal Mason continues to advise on the design of this project and the platform supports the local relationships involved

4 England Co-researcher MasonA colleague of Danny and Mason interviewed Mason audio-recording his answers and translating them into a narrative account She sent this to him to check and double checked again when they met whether he wanted any changes

I first got to know Danny through the advocacy organisation when he came to a meeting to talk about the research A lot of us volunteered It was about places and towns and what you did We ended up presenting the research at the town hall together I think wersquove worked together since 2012

I thought I could work with Danny because of his enthusiasm for research Hersquos got an approachable nature Thinking back to the beginning he made it interesting We had pocket cameras to take pictures of things that meant something to us When he came back with another project idea I thought yeah go for it Wersquove got to know each othermdashhe builds bonds with people He allows you to speak and put your ideasmdashyour frustration at whatrsquos going wrong

Itrsquos good now to work with people from the University thatrsquos really interesting and meeting people from People First itrsquos not all rosy for them but they have big social events For me now moneyrsquos really tight so I donrsquot get out so much The research work has been paid through vouchers which has helped me get some electricals and Dannyrsquos putting money towards a device Danny is good in that way Trips over to the University mean I get to see whatrsquos going on The topics that Danny has come up with have been very interesting and important If someone new asked me to do research I would be interested If you think about it before 2012 Irsquod never met Danny

5 England Academic researcher LucyLucy narrated her experience but co-researcher Emily opted not to contribute her account

Our three-year project was focused on researching the co-production of an inclusive archive of intellectual disability history We secured funding to build a research team that included academics two post-doctoral researchers and an intellectually disabled researcher

This was the first time a UK University had research council funding to employ an intellectually disabled researcher on the same terms and conditions as a post-doctoral researcher The aim was both political and ethical We wanted to demonstrate the value of lived experience and set a precedent for intellectually disabled people to be remunerated fairly for their contributions in academic research It was to signal equality in employment rights but also equality in research relationships The project also had funds to pay a personal assistant for the disabled researcher

Things got off to a shaky start The University required persuading that the project should advertise specifically for a researcher with intellectual disabilities and that its standard recruitment materials and processes needed adaptation to make them accessible this delayed the project start date by months

Eventually we pulled together the core team and hired Emily our intellectually disabled researcher Although Emily did not have much research or self-advocacy experience she was passionate about history and making information accessible While we were in the process of recruiting Emilyrsquos personal assistant support was provided by Anne one of the post-doctoral researchers They worked very closely undertaking an inclusive literature review designing workshops and promoting the project at conferences Much of this was new to Emily who required a lot of support including emotional support She was quite anxious in these first few months They developed a close rapport prompting innovative work as the project progressed

My own relationship with Emily developed more slowly Much of my time on the project involved administrative financial or management issues Delays to the project start date and early team meetings that Emily did not find accessible created tensions which I felt a responsibility to resolve The three researchers (along with Emilyrsquos assistant once she was in place) developed strong working relationships and became lsquoa team within a teamrsquo They spent time together and communicated regularly by Skype My perception was that challenges in managing the work between them were dealt with sensitively kindly and with good humour Emily and Anne both had a strong interest in involving people with profound and multiple intellectual disabilities in the archive and led this strand of work

When Emilyrsquos personal assistant left a few weeks before the end of the project Anne and I agreed with Emily to cover the support role between us By that stage Emily was confident in the job We worked together productively analysing data co-writing an article and organisingarchiving the project material We ate lunch together and talked about our lives our families and our holiday plans Emily still referred to me as lsquothe bossrsquo (a nickname she coined in the first few weeks) but our relationship changed I experienced that with calmness and time co-researching can be a

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts154

hugely stimulating creative and enjoyable process I reflected that much of my time on the project had been focused on schedules and outputs and this had influenced my interactions with Emily Irsquom pleased that we had the opportunity to redress this towards the end I only wished wersquod had the chance to do it earlier

DiscussionThe five research partnerships that form our narrative data sit on a spectrummdashfrom a friendship which blossomed into a writing partnership (1) through to a full blown salaried research post and boss-employee relationship (5) In between was one collaboration which started as a service provider-client relationship and migrated into a friendly research relationship (2) and two where academic researchers talent spotted people who had previously been involved in self-advocacy or research (3 and 4) Four of the five relationships are medium to long term spanning several different projects Only the fifth where the researcher was salaried was confined to one three-year project ending thereafter

Our purpose in gathering and analysing the narratives was to reflect upon ways to foster relationships which support inclusive alongsider research where academics work alongside researchers with intellectual disabilities in conducting research and to ask what supports such relationships It was prompted by the absence of self-advocacy or user-led organisations in Norway to partner academics seeking to do inclusive research The narratives indicate a range of ways to initiate alongsider research relationships Other than in 5 no formal interview scrutiny of skills or qualifications is mentioned Pre-existing relationships were sufficient for the academic to ask an intellectually disabled person to work alongside them These pre-existing relationships came from friend-friend staff-client or researcher-researched beginnings and therefore they had to evolve and transform to become alongside in nature Only in 4 did the co-researcher come from an established advocacy organisation and even there it was based on a personal relationship While self-advocacy groups could not be the route to growing intellectually disabled researchers in Norway in one of the Norwegian examples (2) the opposite was true and research involvement grew a kind of self-advocacy group

In four of the five examples relationships grew organically The relative informality of the projects made this possible and there are lessons for others in this The difference from 5 is striking Emily was appointed through a formal selection process to a salaried post Timescales meant that the relationship could not evolve organically in the same way and the sense of feeling alongside each other was quite different

The five accounts show that building alongsider research relationships is a slow burn something also commented upon by many practitioners of inclusive research including most recently Frankena et al (2019) The personal dimension is central to this slow development The academic researcher is described variously as lsquokindrsquo lsquogentlersquo lsquonicersquo frequently but not always providing friendship as well as a professional relationship Reciprocity is stressed as are common interests They enjoy one anotherrsquos company share time out together Shared interests and fun positive experiences help to consolidate the relationships There is also an element of caring through small acts which helps sustain affection and trust These elements help sustain the relationships in the absence of funding In 5 this is less clear because we do not hear from Emily who declined to contribute having moved on since her employment as a researcher had ended

The external context plays an important part Often relationships started off informally but in the English examples particularly finances for continued research played a part in sustaining the relationship However it is Dannyrsquos personal qualities and commitment not money that encouraged Mason to think he would like to do more research The relationship in 5 survived as long as Emily was employed as a researcher Beyond the end of the project Emily was happy to be friendly have a coffee or a chat but not to put in unpaid work writing for this paper One might describe this as a more instrumental relationship

Working alongside each other the need for support always needs to be tailored to the situation In the Norwegian examples practical support is provided by the academic researchers perhaps influenced by their previous support roles prior to the research In the English examples practical support is ostensibly paid for separately from the academic research role Nevertheless in both academic researchers played a critical role in creating and sustaining the relationships Whatever form inclusive research takes with or without the support of an advocacy organisation or other staff support is inherent to the relationships it cannot be fully outsourced to personal assistants or others

Other than in 5 the research experience began with the researcher with intellectual disabilities reflecting on his or her own life In 2 3 and 4 they gradually migrated to considering other aspects of the lives of people with intellectual disabilities sometimes on matters of which they had no direct experience 5 was again different Emily was appointed because she showed a passionate interest in history at her interview and she was highly motivated to explore issues of consent because she could see how they impacted on people she knew well

In returning to Carrollrsquos (2009) concept of the alongsider we observe that in the literature on the process of doing research inclusively authors have mostly focussed on the dynamics of working alongside each other as researchers and for more activist research standing alongside each other in solidarity This reflects the much-rehearsed questions about who the research is with by and for The narratives in this paper though more illustrate Carrollrsquos dimension of feeling alongside being enjoyed by the people on both sides of the relationship This came through the longevity of many of the relationships and appeared to grow as the relationship grew Moreover this supported the transition into new research projects We suggest that the alongsider concept merits further attention in work developing and examining the added value of inclusive research

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 153

The members helped to co-produce the activities of the platform Mason co-presented findings from our previous project at the launch The grant also enabled us to build international connections with the colleagues in Norway with whom we are writing this paper

Payment for members became an issue as the University refused to pay for vouchers over the long-term and monetary payment provided obstacles to some membersrsquo disability benefits I bought Mason an iPad as payment in lieu Funding cuts began to put constraints on the advocate-facilitators who often missed meetings due to other urgent commitments reminding us that inclusive research relationships are a precarious resource to manage Despite this in 2017 the platform helped inform a successful national research council grant proposal Mason continues to advise on the design of this project and the platform supports the local relationships involved

4 England Co-researcher MasonA colleague of Danny and Mason interviewed Mason audio-recording his answers and translating them into a narrative account She sent this to him to check and double checked again when they met whether he wanted any changes

I first got to know Danny through the advocacy organisation when he came to a meeting to talk about the research A lot of us volunteered It was about places and towns and what you did We ended up presenting the research at the town hall together I think wersquove worked together since 2012

I thought I could work with Danny because of his enthusiasm for research Hersquos got an approachable nature Thinking back to the beginning he made it interesting We had pocket cameras to take pictures of things that meant something to us When he came back with another project idea I thought yeah go for it Wersquove got to know each othermdashhe builds bonds with people He allows you to speak and put your ideasmdashyour frustration at whatrsquos going wrong

Itrsquos good now to work with people from the University thatrsquos really interesting and meeting people from People First itrsquos not all rosy for them but they have big social events For me now moneyrsquos really tight so I donrsquot get out so much The research work has been paid through vouchers which has helped me get some electricals and Dannyrsquos putting money towards a device Danny is good in that way Trips over to the University mean I get to see whatrsquos going on The topics that Danny has come up with have been very interesting and important If someone new asked me to do research I would be interested If you think about it before 2012 Irsquod never met Danny

5 England Academic researcher LucyLucy narrated her experience but co-researcher Emily opted not to contribute her account

Our three-year project was focused on researching the co-production of an inclusive archive of intellectual disability history We secured funding to build a research team that included academics two post-doctoral researchers and an intellectually disabled researcher

This was the first time a UK University had research council funding to employ an intellectually disabled researcher on the same terms and conditions as a post-doctoral researcher The aim was both political and ethical We wanted to demonstrate the value of lived experience and set a precedent for intellectually disabled people to be remunerated fairly for their contributions in academic research It was to signal equality in employment rights but also equality in research relationships The project also had funds to pay a personal assistant for the disabled researcher

Things got off to a shaky start The University required persuading that the project should advertise specifically for a researcher with intellectual disabilities and that its standard recruitment materials and processes needed adaptation to make them accessible this delayed the project start date by months

Eventually we pulled together the core team and hired Emily our intellectually disabled researcher Although Emily did not have much research or self-advocacy experience she was passionate about history and making information accessible While we were in the process of recruiting Emilyrsquos personal assistant support was provided by Anne one of the post-doctoral researchers They worked very closely undertaking an inclusive literature review designing workshops and promoting the project at conferences Much of this was new to Emily who required a lot of support including emotional support She was quite anxious in these first few months They developed a close rapport prompting innovative work as the project progressed

My own relationship with Emily developed more slowly Much of my time on the project involved administrative financial or management issues Delays to the project start date and early team meetings that Emily did not find accessible created tensions which I felt a responsibility to resolve The three researchers (along with Emilyrsquos assistant once she was in place) developed strong working relationships and became lsquoa team within a teamrsquo They spent time together and communicated regularly by Skype My perception was that challenges in managing the work between them were dealt with sensitively kindly and with good humour Emily and Anne both had a strong interest in involving people with profound and multiple intellectual disabilities in the archive and led this strand of work

When Emilyrsquos personal assistant left a few weeks before the end of the project Anne and I agreed with Emily to cover the support role between us By that stage Emily was confident in the job We worked together productively analysing data co-writing an article and organisingarchiving the project material We ate lunch together and talked about our lives our families and our holiday plans Emily still referred to me as lsquothe bossrsquo (a nickname she coined in the first few weeks) but our relationship changed I experienced that with calmness and time co-researching can be a

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts154

hugely stimulating creative and enjoyable process I reflected that much of my time on the project had been focused on schedules and outputs and this had influenced my interactions with Emily Irsquom pleased that we had the opportunity to redress this towards the end I only wished wersquod had the chance to do it earlier

DiscussionThe five research partnerships that form our narrative data sit on a spectrummdashfrom a friendship which blossomed into a writing partnership (1) through to a full blown salaried research post and boss-employee relationship (5) In between was one collaboration which started as a service provider-client relationship and migrated into a friendly research relationship (2) and two where academic researchers talent spotted people who had previously been involved in self-advocacy or research (3 and 4) Four of the five relationships are medium to long term spanning several different projects Only the fifth where the researcher was salaried was confined to one three-year project ending thereafter

Our purpose in gathering and analysing the narratives was to reflect upon ways to foster relationships which support inclusive alongsider research where academics work alongside researchers with intellectual disabilities in conducting research and to ask what supports such relationships It was prompted by the absence of self-advocacy or user-led organisations in Norway to partner academics seeking to do inclusive research The narratives indicate a range of ways to initiate alongsider research relationships Other than in 5 no formal interview scrutiny of skills or qualifications is mentioned Pre-existing relationships were sufficient for the academic to ask an intellectually disabled person to work alongside them These pre-existing relationships came from friend-friend staff-client or researcher-researched beginnings and therefore they had to evolve and transform to become alongside in nature Only in 4 did the co-researcher come from an established advocacy organisation and even there it was based on a personal relationship While self-advocacy groups could not be the route to growing intellectually disabled researchers in Norway in one of the Norwegian examples (2) the opposite was true and research involvement grew a kind of self-advocacy group

In four of the five examples relationships grew organically The relative informality of the projects made this possible and there are lessons for others in this The difference from 5 is striking Emily was appointed through a formal selection process to a salaried post Timescales meant that the relationship could not evolve organically in the same way and the sense of feeling alongside each other was quite different

The five accounts show that building alongsider research relationships is a slow burn something also commented upon by many practitioners of inclusive research including most recently Frankena et al (2019) The personal dimension is central to this slow development The academic researcher is described variously as lsquokindrsquo lsquogentlersquo lsquonicersquo frequently but not always providing friendship as well as a professional relationship Reciprocity is stressed as are common interests They enjoy one anotherrsquos company share time out together Shared interests and fun positive experiences help to consolidate the relationships There is also an element of caring through small acts which helps sustain affection and trust These elements help sustain the relationships in the absence of funding In 5 this is less clear because we do not hear from Emily who declined to contribute having moved on since her employment as a researcher had ended

The external context plays an important part Often relationships started off informally but in the English examples particularly finances for continued research played a part in sustaining the relationship However it is Dannyrsquos personal qualities and commitment not money that encouraged Mason to think he would like to do more research The relationship in 5 survived as long as Emily was employed as a researcher Beyond the end of the project Emily was happy to be friendly have a coffee or a chat but not to put in unpaid work writing for this paper One might describe this as a more instrumental relationship

Working alongside each other the need for support always needs to be tailored to the situation In the Norwegian examples practical support is provided by the academic researchers perhaps influenced by their previous support roles prior to the research In the English examples practical support is ostensibly paid for separately from the academic research role Nevertheless in both academic researchers played a critical role in creating and sustaining the relationships Whatever form inclusive research takes with or without the support of an advocacy organisation or other staff support is inherent to the relationships it cannot be fully outsourced to personal assistants or others

Other than in 5 the research experience began with the researcher with intellectual disabilities reflecting on his or her own life In 2 3 and 4 they gradually migrated to considering other aspects of the lives of people with intellectual disabilities sometimes on matters of which they had no direct experience 5 was again different Emily was appointed because she showed a passionate interest in history at her interview and she was highly motivated to explore issues of consent because she could see how they impacted on people she knew well

In returning to Carrollrsquos (2009) concept of the alongsider we observe that in the literature on the process of doing research inclusively authors have mostly focussed on the dynamics of working alongside each other as researchers and for more activist research standing alongside each other in solidarity This reflects the much-rehearsed questions about who the research is with by and for The narratives in this paper though more illustrate Carrollrsquos dimension of feeling alongside being enjoyed by the people on both sides of the relationship This came through the longevity of many of the relationships and appeared to grow as the relationship grew Moreover this supported the transition into new research projects We suggest that the alongsider concept merits further attention in work developing and examining the added value of inclusive research

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts154

hugely stimulating creative and enjoyable process I reflected that much of my time on the project had been focused on schedules and outputs and this had influenced my interactions with Emily Irsquom pleased that we had the opportunity to redress this towards the end I only wished wersquod had the chance to do it earlier

DiscussionThe five research partnerships that form our narrative data sit on a spectrummdashfrom a friendship which blossomed into a writing partnership (1) through to a full blown salaried research post and boss-employee relationship (5) In between was one collaboration which started as a service provider-client relationship and migrated into a friendly research relationship (2) and two where academic researchers talent spotted people who had previously been involved in self-advocacy or research (3 and 4) Four of the five relationships are medium to long term spanning several different projects Only the fifth where the researcher was salaried was confined to one three-year project ending thereafter

Our purpose in gathering and analysing the narratives was to reflect upon ways to foster relationships which support inclusive alongsider research where academics work alongside researchers with intellectual disabilities in conducting research and to ask what supports such relationships It was prompted by the absence of self-advocacy or user-led organisations in Norway to partner academics seeking to do inclusive research The narratives indicate a range of ways to initiate alongsider research relationships Other than in 5 no formal interview scrutiny of skills or qualifications is mentioned Pre-existing relationships were sufficient for the academic to ask an intellectually disabled person to work alongside them These pre-existing relationships came from friend-friend staff-client or researcher-researched beginnings and therefore they had to evolve and transform to become alongside in nature Only in 4 did the co-researcher come from an established advocacy organisation and even there it was based on a personal relationship While self-advocacy groups could not be the route to growing intellectually disabled researchers in Norway in one of the Norwegian examples (2) the opposite was true and research involvement grew a kind of self-advocacy group

In four of the five examples relationships grew organically The relative informality of the projects made this possible and there are lessons for others in this The difference from 5 is striking Emily was appointed through a formal selection process to a salaried post Timescales meant that the relationship could not evolve organically in the same way and the sense of feeling alongside each other was quite different

The five accounts show that building alongsider research relationships is a slow burn something also commented upon by many practitioners of inclusive research including most recently Frankena et al (2019) The personal dimension is central to this slow development The academic researcher is described variously as lsquokindrsquo lsquogentlersquo lsquonicersquo frequently but not always providing friendship as well as a professional relationship Reciprocity is stressed as are common interests They enjoy one anotherrsquos company share time out together Shared interests and fun positive experiences help to consolidate the relationships There is also an element of caring through small acts which helps sustain affection and trust These elements help sustain the relationships in the absence of funding In 5 this is less clear because we do not hear from Emily who declined to contribute having moved on since her employment as a researcher had ended

The external context plays an important part Often relationships started off informally but in the English examples particularly finances for continued research played a part in sustaining the relationship However it is Dannyrsquos personal qualities and commitment not money that encouraged Mason to think he would like to do more research The relationship in 5 survived as long as Emily was employed as a researcher Beyond the end of the project Emily was happy to be friendly have a coffee or a chat but not to put in unpaid work writing for this paper One might describe this as a more instrumental relationship

Working alongside each other the need for support always needs to be tailored to the situation In the Norwegian examples practical support is provided by the academic researchers perhaps influenced by their previous support roles prior to the research In the English examples practical support is ostensibly paid for separately from the academic research role Nevertheless in both academic researchers played a critical role in creating and sustaining the relationships Whatever form inclusive research takes with or without the support of an advocacy organisation or other staff support is inherent to the relationships it cannot be fully outsourced to personal assistants or others

Other than in 5 the research experience began with the researcher with intellectual disabilities reflecting on his or her own life In 2 3 and 4 they gradually migrated to considering other aspects of the lives of people with intellectual disabilities sometimes on matters of which they had no direct experience 5 was again different Emily was appointed because she showed a passionate interest in history at her interview and she was highly motivated to explore issues of consent because she could see how they impacted on people she knew well

In returning to Carrollrsquos (2009) concept of the alongsider we observe that in the literature on the process of doing research inclusively authors have mostly focussed on the dynamics of working alongside each other as researchers and for more activist research standing alongside each other in solidarity This reflects the much-rehearsed questions about who the research is with by and for The narratives in this paper though more illustrate Carrollrsquos dimension of feeling alongside being enjoyed by the people on both sides of the relationship This came through the longevity of many of the relationships and appeared to grow as the relationship grew Moreover this supported the transition into new research projects We suggest that the alongsider concept merits further attention in work developing and examining the added value of inclusive research

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 155

External factors along with the way the research is conceived and funded emerge as crucial in determining how the relationships develop Where the work was informal unfunded mutually determined there was the luxury of time to get to know one another to get things just right Where there is funding and a timetable the relationship building has to be managed differently These accounts do not discuss the difference in education level between researchers with intellectual disabilities and academic researchers differences which may lead to asymmetrical relationships None of the narratives directly addresses the question of power which has been such a point of debate in the literature on inclusive research (see eg McClimens 2008 Ellis 2018) Whether negotiating power dynamics was an issue in the research itself it appears not to have been a factor in the long-term relationship building which features here The reasons for this are unclear It may be that alongsider relationships were achieved including relationships built on equal employment in the case of 5-or built on genuine affection and mutuality as in the other cases-thereby helping to ward off disagreement or conflict over research processes methods and findings It is also possible that the relationship is so valuable to both sides that no one wants to risk dissent Being regarded as more than a lsquoservice userrsquo matters a lot as does being a researcher who is inclusive

Contextual influences may also constitute a form of power including the facilities for carrying out the research the opportunities the co-researcher is given and the beliefs (theories and values) of other people The properties possessed by the social and cultural forms such as the academic research environment administrative systems at the University work tasks and everyday life situations may be very different for co-researchers than from those possessed by the academics The academics have to negotiate these in order to be able to work productively with intellectually disabled researchers whether this is adapting employment practices (5) finding ways to pay the co-researcher (4) or simply negotiating with ethical committees (Wikgren 2005) The academic must organise the ldquoinstitutional responserdquo which makes it possible for the co-researcher to exercise any power (Payne 1997) Further reflection is needed to explore how alongsider research by people in close long-lasting working relationships permits or inhibits disagreement and difference possibly through inviting an observer to research meetings and conference presenting with a view to commenting on the way power is used

Finally the implications for these findings for researchers who may not have such alongsider relationships already need to be considered given the pressures in some countries to co-produce Our findings suggest that investing time in building such relationships incrementally ahead of attempting large scale research projects is important for researchers doing research inclusively with people with intellectual disabilities

ConclusionThis paper moves the discussion on research relationships in inclusive research beyond who holds the power deliberately echoing the way Carroll (2009) positions power in the Foucauldian sense as shifting and uncertain Instead of making the research participants or the co-researcher relationships the objects of academic scrutiny we have tried to bring narratives about those relationships alongside each other and into dialogue Reflecting on the five examples alongside the academic authorsrsquo broader experience in inclusive research we propose that to build insightful alongsider perspectivesmdashwhere researchers from different standpoints investigate and reflect upon aspects of their own lives and those of othersmdashthere needs to be a sustained relationship based on mutual respect even liking each other Developing this involves making the communication effective so that people can express themselves and understand each other It involves building feelings of equality and trust which enable all the parties to use their best resources This is a positive informed handling of the power issues Money and resources help but the relationship depends on more than material recompense Time is needed to relax into relationships that are allowed to build slowly and organically Sharing an interest or a purpose also plays a role External constraints such as timetables funding and research topics can get in the way

Competing InterestsThe authors have no competing interests to declare

ReferencesAndrews Molly 2007 Shaping History Narratives of Political Change Cambridge Cambridge University Press DOI

httpsdoiorg101017CBO9780511557859Armstrong Alan Mal Cansdale Anne Collis Bryan Collis Simon Rice and Jan Walmsley 2019 ldquoWhat Makes a Good

Self Advocacy Project The Added Value of Co-Productionrdquo Disability and Society DOI httpsdoiorg1010800968759920191613960

Atkinson Dorothy Mark Jackson and Jan Walmsley 1997 Forgotten Lives Exploring the history of learning disability Kidderminster BILD Publications

Atkinson Dorothy Micelle McCarthy Jan Walmsley et al 2000 Good Times Bad Times Women with learning difficulties telling their stories Kidderminster BILD Publications

Bigby Christine Patsie Frawley and Paul Ramcharan 2014 ldquoA Collaborative Group Method of Inclusive Researchrdquo Journal of Applied Research in Intellectual Disabilities 27 54ndash64 DOI httpsdoiorg101111jar12082

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts156

Bjoumlrnsdoacutettir Kristin and Aileen Soffiacutea Svensdoacutettir 2008 ldquoGambling for Capital Learning Disability Inclusive Research and Collaborative Life Historiesrdquo British Journal of Learning Disabilities 36 263ndash70 DOI httpsdoiorg101111j1468-3156200800499x

Butler Gary Amanda Cresswell Nikoletta Giatras and Irene Tuffrey-Wijne 2012 ldquoDoing it lsquoTogetherrsquordquo British Journal of Learning Disabilities 40 134ndash142 DOI httpsdoiorg101111j1468-3156201200744x

Carroll Katherine 2009 ldquoOutsider insider alongsider Examining reflexivity in hospital-based video researchrdquo International Journal of Multiple Research Approaches 3(3) 246ndash263 DOI httpsdoiorg105172mra33246

Chapman Rhoss and Niall McNulty 2004 ldquoBuilding bridges The role of research support in self-advocacyrdquo British Journal of Learning Disabilities 32 77ndash85 DOI httpsdoiorg101111j1468-3156200400283x

Ellis Liz 2018 ldquoMaking decisions together Exploring the decision-making process in an inclusive research projectrdquo Disability amp Society 33(3) 454ndash475

Fjetland Kirsten Jaeligger 2015 Medforfatterskap i tilrettelagt arbeid en studie av narrativ praksis i relasjonen mellom arbeidstaker og arbeidsleder i tilrettelagt arbeid VTA (nr 271) Universitetet i Stavanger Det humanistiske fakultet Stavanger

Fjetland Kirsten Jaeligger 2019 Rehabiliteringsprosesser som narrativ omsorg In Rehabiliteringsprosesser som narrativ omsorg 17ndash37 Oslo

Frankena Tessa 2019 Optimising Inclusive Health Research Where expectations and realities meet ndash Meaningful collaboration with people with intellectual disabilities Nijmegen Radboud umc

Frankena Tessa K Jenneken Naaldenberg Hilde Tobi Anneke van der Cruijsen Henk Jansen Henny van Schrojenstein Lantman-de Valk Geraline Leusink and Mieke Cardol 2019 ldquoA Membership Categorization Analysis of Roles Activities and Relationships in Inclusive Research Conducted by Co-researchers with Intellectual Disabilitiesrdquo Journal of Applied Research in Intellectual Disabilities 32(3) 719ndash729 DOI httpsdoiorg101111jar12567

Goodley Dan 2001 ldquoLearning difficulties the social model of disability and impairment Challenging epistemologiesrdquo Disability and Society 16 207ndash231 DOI httpsdoiorg10108009687590120035816

Herron Daniel Helena M Priest and Sue Read 2015 ldquoWorking Alongside Older People with a Learning Disability Informing and shaping research designrdquo British Journal of Learning Disabilities 43 261ndash269 DOI httpsdoiorg101111bld12147

Learning Difficulties Research Team Let Me In ndash Irsquom a Researcher Department of HealthMcClimens Alex 2008 ldquoThis is My Truth Tell Me Yours Exploring the internal tensions within collaborative

learning disability researchrdquo British Journal of Learning Disabilities 36 271ndash276 DOI httpsdoiorg10 1111j1468-3156200700485x

Nind Melanie 2014 What is Inclusive Research London Bloomsbury AcademicNind Melanie and Hilra Vinha 2014 ldquoDoing Research Inclusively Bridges to multiple possibilities in inclusive

researchrdquo British Journal of Learning Disabilities 42 102ndash09 DOI httpsdoiorg101111bld12013Oslashstby May and Marit Haugenes (Eds) 2019 Inkluderende forskning sammen med personer med utviklingshemming en

metodebok [Including research with people with learning disabilities A method book] Oslo UniversitetsforlagetPayne M 1997 Modern Social Work Theory Hampshire Macmillan DOI httpsdoiorg101007978-1-349-14284-2Roets Griet Dan Goodley and Geert Van Hove 2007 ldquoNarrative in a nutshell Sharing hopes fears and dreams with

self-advocatesrdquo Intellectual and Developmental Disabilities 45(5) 323ndash334 DOI httpsdoiorg101352 0047-6765(2007)45[323NIANSH]20CO2

Strnadovaacute Iva Susan Collings Julie Loblinzk and Joanne Danker 2019 ldquoParents with Intellectual Disabilities and their Perspective of Peer Support lsquoIt depends on how they give itrsquordquo Journal of Applied Research in Intellectual Disability 32 879ndash889 DOI httpsdoiorg101111jar12579

Strnadovaacute Iva Therese M Cumming Marie Knox Trevor Parmenter and Welcome to Our Class Research Group 2014 ldquoBuilding an Inclusive Research Team The importance of team building and skills trainingrdquo Journal of Applied Research in Intellectual Disability 27 13ndash22 DOI httpsdoiorg101111jar12076

Townson Lou Sue Macauley Elizabeth Harkness Rohhss Chapman Andy Docherty John Dias Malcolm Eardley and Niall McNulty 2004 ldquoWe are All in the Same Boat Doing lsquopeople-led researchrsquordquo British Journal of Learning Disabilities 32 72ndash76 DOI httpsdoiorg101111j1468-3156200400282x

Walmsley Jan 2004 ldquoInclusive Learning Disability Research The (nondisabled) researcherrsquos rolerdquo British Journal of Learning Disabilities 32 65ndash71 DOI httpsdoiorg101111j1468-3156200400281x

Walmsley Jan and Kelly Johnson 2003 Inclusive Research with People with Learning Disabilities Past Present and Futures London Jessica Kingsley

Walmsley Jan and Simon Jarrett 2019 Intellectual Disability in the Twentieth Century Transnational perspec-tives on people policy and practice Bristol Policy Press DOI httpsdoiorg101332policypress978144 73445750010001

Wikgren Marianne 2005 ldquoCritical realism as a philosophy and social theory in information sciencerdquo Journal of Documentaton 61(1) 11ndash22 DOI httpsdoiorg10110800220410510577989

Woelders Susan Tineke Abma Tamara Visser and Karen Schipper 2015 ldquoThe Power of Difference in Inclusive Researchrdquo Disability amp Society 30 528ndash542 DOI httpsdoiorg1010800968759920151031880

Chalachanovaacute et al Building Relationships in Inclusive Research in Diverse Contexts 157

How to cite this article Chalachanovaacute Anna Melanie Nind May Oslashstby Andrew Power Liz Tilley Jan Walmsley Britt-Evy Westergaringrd Torill Heia Alf Magne Gerhardsen Ole Magnus Oterhals and Matthew King (2020) Building Relationships in Inclusive Research in Diverse Contexts Scandinavian Journal of Disability Research 22(1) pp 147ndash157 DOI httpsdoiorg1016993sjdr681

Submitted 28 October 2019 Accepted 20 April 2020 Published 07 May 2020

Copyright copy 2020 The Author(s) This is an open-access article distributed under the terms of the Creative Commons Attribution 40 International License (CC-BY 40) which permits unrestricted use distribution and reproduction in any medium provided the original author and source are credited See httpcreativecommonsorglicensesby40

OPEN ACCESS Scandinavian Journal of Disability Research is a peer-reviewed open access journal published by Stockholm University Press